WE WILL END HEALTH CARE DISCUSSION WITH END OF LIFE POLICY
We had the detailed discussion about differences in chemical and biologics as PHARMA and medical devices -----biologics is completely untested over time and yes, moving them through a clinical trial process would take time and cost----the dangers of replacing long-term observation with implanted microchip data-----WAKE UP FOLKS!
'Hillary’s plan includes new enforcement tools that make drug alternatives available and increase competition, broaden emergency access to high-quality treatments from developed countries with strong safety standards, and hold drug companies accountable for unjustified price increases with new penalties'.
THAT IS WHY HEALTH CARE HAS BEEN PUBLIC! OUR PUBLIC RESEARCH UNIVERSITIES USED TO TAKE THAT TIME---THE NATIONAL INSTITUTES OF HEALTH WOULD SEND ALL FUNDING TO THOSE PUBLIC RESEARCH UNIVERSITIES WHERE ALL THAT STRONG FDA-----PUBLIC INTEREST/PUBLIC PROTECTION MEDICAL RESEARCH KEPT US CITIZENS SAFE WITH QUALITY HEALTH CARE.
So, Hillary is pretending that deregulating this strong oversight will bring more medical devices to market---ALL THAT INNOVATION----bringing it faster with fewer hoops to jump will lower cost-----OH, REALLY? Has anyone noticed this? Hold drug companies accountable with new penalties? Trans Pacific Trade Pact doesn't allow those kinds of penalties!
Today we will talk about END OF LIFE-----INCREASED FUNDING FOR HOSPICE----AND HOW ALL THAT IS TIED TO BRINGING HEALTH COSTS DOWN......
We are reading that Medicare spending has dropped these several years of Affordable Care Act as seniors are no longer seeking care for ordinary problems because they cannot afford the cuts to Medicare programs and because they
ENDED THE FEDERAL PROGRAM THAT REIMBURSED HOSPITALS FOR THAT ORDINARY CARE FOR LOW-INCOME PATIENTS---INCLUDING SENIORS AND GUTTED MEDICARE OF ALMOST $1 TRILLION IN FUNDING----THAT IS WHAT OBAMA AND CLINTON NEO-LIBERALS DID---AND THEY CALL THAT GOOD FEDERAL BUDGET DEFICIT REDUCTION----
Only our Federal public trusts MEDICARE AND SOCIAL SECURITY have nothing to do with the national budget deficit-----these are pre-paid health and retirement programs that cannot be cut.
'Bring down out-of-pocket costs like copays and deductibles. American families are being squeezed by rising out-of-pocket health care costs. Hillary believes that workers should share in slower growth of national health care spending through lower costs'.
Cut almost $1 trillion from Medicare spending-----change Medicare program spending making it harder for seniors to access ordinary health care for some of the most common disease vectors----AND VOILA-----MEDICARE SPENDING DECLINES. Republican think tanks wrote these Affordable Care Act policies just to take access to senior health care away.
Biden Aims for $1 Trillion in Cuts, Opens Medicare...
May 24, 2011 · ... debt as talks turned to Medicare, ... at least $1 trillion in budget cuts from negotiations with ... $1 Trillion in Cuts, Opens Medicare ...
Yes, Obamacare is cutting the deficit
By Paul Waldman August 27, 2014
(AP Photo/Jon Elswick)
Today the Congressional Budget Office released its latest economic and fiscal projections, and guess what: The news is pretty good. In fact, all the “deficit hawks” out there who are deeply concerned about too much borrowing and the terrible choices our grandchildren will confront might want to write a letter of thanks to one Barack Hussein Obama.
To start things off, the CBO says the deficit this year will be $506 billion, or 2.9 percent of GDP. In 2013 it was $680 billion, so that’s a pretty steep drop. And in terms of GDP, not only is that slightly lower than the average deficit of the last 40 years (3.1 percent), it’s also a 70 percent decline from Obama’s first year in office, where because of the Great Recession, which brought both the need for more spending and a plunge in tax revenues, the deficit peaked at 9.8 percent of GDP.
We should note that a lot of people thought that the deficit was cut too fast, and that we switched prematurely from stimulus to austerity, dragging out the nation’s suffering and keeping the recovery from taking hold in a meaningful way. But whether or not you agree, you can’t say that there hasn’t been dramatic progress on reducing the deficit under this president.
The other thing to note is the CBO’s new projections on Medicare. Ask any conservative, and they’ll tell you that the real threat to our future is entitlements, and Medicare in particular. With all those Baby Boomers retiring and eating up more and more of the nation’s wealth through health care costs, Medicare will eventually devour the entire federal budget, drowning us in debt and rendering us unable to do anything except care for our elders.
But things are looking pretty good on that front as well. The New York Times’ “The Upshot” has a nice graphic showing how the CBO’s projections for future Medicare spending have gone down and down in recent years. Here’s how they describe it:
The difference between the current estimate for Medicare’s 2019 budget and the estimate for the 2019 budget four years ago is about $95 billion dollars. That sum is greater than the government is expected to spend that year on unemployment insurance, welfare and Amtrak — combined. It’s equal to about one-fifth of the expected Pentagon budget in 2019. Widely discussed policy changes, like raising the estate tax, would generate just a tiny fraction of the budget savings relative to the recent changes in Medicare’s spending estimates.
In more concrete terms, the reduced estimates mean that the federal government’s long-term budget deficit is considerably less severe than commonly thought just a few years ago. The country still faces a projected deficit in future decades, thanks mostly to the retirement of the baby boomers and the high cost of medical care, but it is not likely to require the level of fiscal pain that many assumed several years ago.
Like the program itself, the reasons for the slowdown in Medicare spending are complicated. But a big part of it is — you guessed it — the Affordable Care Act. The ACA has found direct savings in Medicare with things like cuts to some provider payments. More importantly, it has tried to achieve longer-term savings through means like encouraging hospitals to reduce readmissions (where a patient gets treated and released, then winds up back in the hospital a week later) and rolling out payment systems that promote more holistic care instead of just piling on expensive tests and procedures. It also has provisions that probably haven’t reduced spending yet but likely will eventually, like spurring the shift to electronic records.
There is a transformation going on in American medicine, one that’s slow and sometimes painful. But it is happening, and that’s in no small part because of the ACA. Health care in America isn’t going to become dirt cheap, and Medicare will still make up a substantial part of the budget in coming years. But the situation isn’t nearly as bleak as people thought it would be just a few years ago. Medicare is still the biggest driver of future deficits, but the next time you hear a conservative say we have to “rein in entitlements,” you can remind them that nothing any president has done to achieve that goal has been nearly as effective as the reforms contained within the hated Obamacare.
Far-right wing CLINTON/OBAMA 1% Wall Street global corporate neo-liberals led the charge of austerity under the guise of losses from our US Treasury of tens of trillions of dollars in corporate and Wall Street frauds these few decades-----saying that fraud needed to be replaced with austerity cuts to our Federal social programs and trusts like Medicare/Medicaid/Social Security------so Obama and Clinton neo-liberals cut almost $1 trillion in 2010-2011----and now we see Republicans doing the same in 2016 to Medicaid=====remember this is tag team policy-----they both have that goal of ending our Federal public health programs and these kinds of cuts will do that. As Medicare becomes MEDICAID-====Medicaid expansion will follow with these austere cuts in Medicaid----and all WE THE PEOPLE will have in health care coverage is preventative care with global investment firms and corporate NGOs 'donating' to a network of completely deregulated health care with no oversight and accountability----BUT ALL DATA WILL SHOW THESE POLICIES ARE WORKING TO LOWER COSTS AND EXPAND ACCESS TO HEALTH CARE IN AMERICA!
'Cut almost $1 trillion from Medicare spending-----change Medicare program spending making it harder for seniors to access ordinary health care for some of the most common disease vectors----AND VOILA-----MEDICARE SPENDING DECLINES. Republican think tanks wrote these Affordable Care Act policies just to take access to senior health care away'.
Remember----US health costs are not driven by patient access---it is driven by health industry fraud and profiteering which has soared these same several years.
Ryan is the same as Hillary is the same as Boehner is the same as Pelosi-----they are all 1% Wall Street global pols MOVING FORWARD these same policy issues.
THESE 2016 DEMOCRATIC PRIMARY ELECTION FRAUDS MATTER---THIS IS WHY WE HAVE FAR-RIGHT REAGAN NEO-LIBERALS CONTROLLING OUR LEFT-LEANING DEMOCRATIC PARTY!
GOP plans $1 trillion Medicaid cut
By Jonathan Allen
03/31/11 12:10 PM EDT
House Republicans are planning to cut roughly $1 trillion over 10 years from Medicaid, the government health insurance program for the poor and disabled, as part of their fiscal 2012 budget, which they will unveil early next month, according to several GOP sources.
Though Budget Committee Chairman Paul Ryan has yet to lock in his final numbers, he made clear to POLITICO in February that he intends to target Medicaid and Medicare for savings. While Medicaid is easiest to win consensus on, Medicare is the biggest debt driver. It’s not yet clear how much Ryan hopes to cut from Medicare, and he and GOP leaders have been reluctant to discuss their plans for the other entitlement behemoth: Social Security. But they’ve made clear that they don’t consider Social Security to be as pressing an issue as Medicare and Medicaid.
The entitlement cuts represent a major battleground for the parties from now through the 2012 election: Democrats are already accusing Republicans of slashing benefits for the neediest Americans, but Republicans say Medicaid needs to be reformed to give states more flexibility in how they use federal dollars — and to rein in costs for both the federal government and state legislatures, which are swimming in red ink because of health care expenditures.
To bolster their cause, GOP leaders point to years of requests from governors to reform Medicaid so their states aren’t on the hook for so much money in the federal-state partnership.
Because the new health care law includes a major expansion of the program, there’s a double bonus for GOP leaders slashing it: It’s a bigger pot than it used to be, and it’s a major component of what Republicans derisively call “Obamacare.”
They have vowed to target entitlement spending in their budgets, after chiding President Barack Obama for failing to lead because his fiscal 2012 blueprint didn’t touch Medicaid, Medicare or Social Security. Under Obama’s budget, Medicaid grants to states would more than double — to about $600 billion per year — by 2021.
Ryan’s spokesman, Conor Sweeney, said it’s still “premature to speculate on specifics,” but he didn’t knock down the trillion-dollar figure.
“Chairman Ryan has committed to put forward a budget that deals with the drivers of the debt. He has committed to put forward a budget that helps spur job creation and economic growth. He has committed to put forward a budget that helps save the nation’s critical health and retirement security programs,” Sweeney said Thursday. “By contrast, given their refusal to lead, the president and his party’s leaders are committing the nation to the bankruptcy of these programs, the bankruptcy of the federal government and a debt-fueled economic crisis.”
Ryan’s preferred treatment for Medicaid, outlined in a policy booklet called “A Roadmap for America’s Future,” is to convert current federal payments to states into direct assistance in the form of $11,000 per year per recipient, which could be used to purchase private insurance. It’s not clear whether Ryan envisions pursuing his prescription for Medicaid or a different formula for restructuring the program.
These several years of creating PRIVATE MANAGED CARE STATE HEALTH SYSTEMS at the same time gutting the funding of our public health trusts Medicare and Medicaid creates the need to do something for the hundreds of millions of US citizens who will JUST DIE-----as the 1% and their 2% global Wall Street like to say----from suddenly not being able to access ordinary disease vector and PHARMA treatments.
THIS IS WHY OBAMA AND CLINTON NEO-LIBERALS INCREASED FUNDING AND CREATED STRUCTURES INSIDE MANAGED CARE TO COUNCIL CITIZENS INTO HOSPICE------WE MOVE FROM TREATMENT AS THE EMPHASIS IN DO NO HARM ---TO STRUCTURES TO SEND PEOPLE TO EARLY DEATH.
Republicans tried to use the term DEATH PANEL-----and they were right---but their reasons are not to protect citizens---they simply want to get rid of all Federal spending for public health. So MEDICAID FOR ALL is not needed ----Republicans are truly JUST DIE.
These managed care policies towards walking citizens towards end of life decisions focus heavily on how extending life costs affect family wealth---ergo Hillary saying they are cutting costs for health care. The US has always had hospital and doctor care where patients can and do opt to not have life-saving procedures done at end of life=====people have always had this choice. The purpose of creating and funding entire structures around this end of life discussion is-----citizens will be forced to choose ending their lives because they will not be able to afford to access major disease vector care. We already have many Americans dying from simply inability to access cancer treatments for example. We will not read or hear of these climbing number of deaths----it will not be made public----we will read that more citizens have insurance and costs for health care are falling.
BINDING RECOMMENDATIONS HERE IS THAT 2020 WINDOW TIED TO THE COMING ECONOMIC CRASH FROM MASSIVE US TREASURY AND MUNICIPAL BOND MARKET FRAUD THAT WILL MAKE JUNK BONDS OF FEDERAL, STATE, AND LOCAL GOVERNMENT COFFERS.....
'Beginning in 2020, the bill will have this board make binding biennial recommendations to Congress in the, very likely, event that growth in overall health spending is greater than that of Medicare itself'.
This is what national women's, labor union, senior, civil rights organization leaders are pushing for when they support Clinton Wall Street global corporate neo-liberals every Democratic primary election-----literally killing citizens earlier than necessary because these Wall Street players allowed global corporations and Wall Street to steal all our public trusts and public assets. This is what a Mikulski did as she received a medal for women's issues and it is women and children who are harmed most----EVERYONE IS HARMED----AND THESE 5% TO THE 1% KNOW THIS-----
Op-Ed: Obamacare and its impact on end-of-life care
End-of-life care is facing a very serious challenge from the Patient Protection and Affordable Care Act, popularly known as Obamacare. What will be affected and how the program could have to turn to the private sector.
There comes a point in every family’s life when a loved one reaches a stage of their life when they need a great deal of help. Age and infirmity take their toll on the most virulent of people and eventually loved ones and professionals have to step in and help older citizens to live the end of their lives with dignity and respect. Regardless of whether that care is provided by persons at home, or within a nursing home these are important decisions that need to be made on a variety of levels including financial. One of the saddest results of Medicare cuts is the direct affect it will have on Hospice care around the country, most especially in rural communities. A 2011 study found that the 2% cuts that have already been pushed through on Medicare reimbursement will decrease the overall profit margins from 4% in 2008 to a negative 11% by 2019. This data shows that over 66% of all hospice programs would be affected negatively by these same, seemingly small, cuts. And it gets worse. Hospice care for rural America, where it is most needed, will decrease in profit margins from 0% in 2008, to a negative sixteen percent (-16%) by the year 2019.
J. Donald Schumacher the president and chief executive officer of The National Hospice and Palliative Care Association (NHPCO), which commissioned the study, had this to say “This analysis confirms our worst fears. With the entire hospice community – rural and urban, large and small, community-based and multi-state – being hit by the same devastating slope downward, there is no way for patient access to not be negatively impacted.” The Patient Protection and Affordable Care Act (ACA) of 2010, is set to add an additional 11.8% in cuts to Medicare payments to hospice care over the next ten years through the introduction of productivity adjustments which could be devastating for the availability of hospice care for Medicare and Medicaid beneficiaries who make up the majority of the patients who take advantage of hospice care. In fact more than 85% of revenue that comes into Hospice comes from Medicare or Medicaid, cuts to which will significantly impact the ability of many programs to offer services. Most hard hit will be some of the extra programs and particularly charity programs offered by organizations to the elderly. Hospice by the Bay CEO Sandra Lew wrote in an annual report for 2008-2009, adding that a reduction in services could arise from such cuts. “Most hospices will have to look at their services, especially any charity and other services that won’t be reimbursed,” she said. “We’ll have to look at that.” In terms of real dollars the effects of these cuts are even starker, though hospice leaders are seeking further legislation to try and offset some of the deeper cuts. With today’s program, in place as is, the cuts would total a minimum, and possibly more, than $10 Billion. Even with legislation to blunt the effects, the cuts would total around $7.8 Billion. While simultaneously looking at cutting programs and slimming down their budget, which means less staff besides less services, hospice organizations around the country are going to have to augment their revenue and cash flow by increasing their fund raising activities and depending far more heavily on private organizations and donations to keep the programs, which they are already offering, alive. Meanwhile the as part of the Patient Protection and Affordable Care Act, there would be a serious focus on reforming the payments made to hospice programs under which the Secretary uses data collected through 2011 to implement reforms. In other words the Secretary would implement revisions to the methodology for determining the payment rates for routine home care and other services included in hospice care no earlier than FY 2013. Once the program gets to 2013 each patient who is scheduled o get hospice care would need to meet with a hospice nurse practitioner in a face to face meeting. During this meeting the hospice care practitioner would need to determine if the patient was still eligible to receive hospice care. This would need to take place prior to the 180 recertification and also before each recertification. The practitioner would also need sign off on the fact that this meeting had taken place. Alarmingly the Secretary would then review “certain” patients in hospice with a high percentage of this focus being long term patients. In other words a secretary, appointed by the government, would be the final word in the continuation of health care benefits like hospice for the elderly. The plan adds an additional Independent Payment Advisory Board, which would be tasked with presenting Congress, with a series of comprehensive measures to reduce payments, excess growth in costs, and ways to “improve” the quality of care provided to Medicare recipients. Beginning in 2020, the bill will have this board make binding biennial recommendations to Congress in the, very likely, event that growth in overall health spending is greater than that of Medicare itself. The Secretary has been given the authority to test value based purchasing programs for long term care providers by 2016. This will include hospice and other providers. The NHPCO has announced that it will continue to fight and seek legislative measures to blunt or reduce these cuts and measures altogether because it understands that end of life programs can simply not afford to lose billions of dollars and still remain viable, and affordable. Hiring of employees is one of the key measures that will suffer under these cuts. Fedelta Care Solutions, a Washington Based Home Hospice Provider believes that the key to providing great hospice care is the quality of people that are hired. This is mirrored by an anonymous quote on Fedelta’s website by a client, whose parent cared for by the company "It was truly awesome that the caregivers were so well matched to my parent's needs - both medical and personal aspects." Families everywhere are already struggling with the cost of providing medical insurance for their families and dealing with the rising cost of living. End of life, is a very emotional time that is already extremely stress filled. Families should not have to struggle to deal with the rising costs due to Medicare cuts, nor should those who have reached the end of their life have to sacrifice on the type and quality of care they receive because of the irresponsibility of other people. Companies like Fedelta are out there, providing the best care in the industry. It is up to use to make sure that Medicare continues to be funded so that it can continue to fund programs caring for our seniors at the end of their life. This is the least we can expect from ourselves, our government, and our political leaders.
Obama presidency to end with $20 trillion national...
Nov 1, 2015 ... $20 trillion man: National debt nearly doubles during Obama presidency ... $112 billion in spending increases is fully funded by cuts elsewhere.
Here we have national media giving accolades to Obama just as they did Clinton when he ended Welfare-----Obama cut national budget on the backs of Medicare and Medicaid public health. So, while Clinton created the widespread poverty and long-term unemployment in our cities with 'WELFARE REFORM'----now Obama will have American life-expectancy diving to third world levels----all of these policies are Republican right wing----all kill FDR and War on Poverty MLK legacy----and all these policies harm women and children the most.
No matter how many block grants targeting children are sent out under the guise of Medicaid expansion ---all of that is simply hiding the fact that all Americans are going to be WORKING TIL THEY DROP AND DIE EARLY FROM WORKING TOO HARD.
Deficit shrinks by $1 trillion in Obama era
10/15/15 04:37 PM--Updated 10/16/15 06:28 PM
By Steve Benen
In the not-too-distant past, talk in the political world of the U.S. budget deficit was all the rage. As the Tea Party “movement” took shape, conservatives quite literally took to the streets to express their fear that President Obama and Democrats were failing to address the “out of control” deficit.
THEY HAVE SAID NOTHING OF THE $20 TRILLION IN NATIONAL DEBT AND REPUBLICAN STATES ARE THE MOST LIKELY TO HAVE HUGE BOND DEBT!
Congressional Republicans agreed. As recently as 2013, Sen. Rand Paul (R-Ky.) was asked about the radicalism of his political agenda and he responded, “[W]hat I would say is extreme is a trillion-dollar deficit every year.” Around the same time, then-House Majority Leader Eric Cantor (R-Va.) argued that Congress should be “focused on trying to deal with the ultimate problem, which is this growing deficit.”
The Republican rhetoric was ridiculously wrong. We don’t have a trillion-dollar deficit; the deficit isn’t the ultimate problem; and it’s not growing.
Strong growth in individual tax collection drove the U.S. budget deficit to a fresh Obama-era low in fiscal 2015, the Treasury Department said Thursday.
For the fiscal year that ended Sept. 30 the shortfall was $439 billion, a decrease of 9%, or $44 billion, from last year. The deficit is the smallest of Barack Obama’s presidency and the lowest since 2007 in both dollar terms and as a percentage of gross domestic product.
Keep in mind, in the Obama era, the deficit has shrunk by $1 trillion. That’s “trillion,” with a “t.” As a percentage of the economy, the deficit is now down to just 2.5%, which is below the average of the past half-century, and down from 9.8% when the president took office.
Revisiting our coverage from several months ago, I looked for press releases from the “Obama is turning us into Greece!” crowd, eager to see them celebrate President Obama’s striking record on deficit reduction, but so far, nothing has turned up. Maybe they’re busy.
And in practical terms, that’s a shame. The vast majority of Americans are absolutely certain – thanks to deceptive Republican rhetoric and unfortunate news coverage – that the deficit has soared in the Obama era. Late last year, a Bloomberg Politics Poll found that 73% of the public believes the deficit has gotten bigger over the last six years.
NATIONAL DEBT NOT DEFICIT!!!
The year before, the same pollster found that only 6% of Americans realized the deficit was shrinking. It helps explain why the president hasn’t gotten any credit for deficit reduction, which seems like the sort of development Tea Partiers and the Beltway’s Very Serious People should consider an extraordinary accomplishment.
As we talked about last year, it’s tempting to conclude that the public’s confusion doesn’t matter. In the Clinton era, the deficit disappeared entirely, and Americans had no idea.
But there’s another side to this. Whether or not Americans know and/or understand the basics of the fiscal argument may not have a practical impact on the debate itself, but the fact remains that voters are ultimately responsible for electing policymakers. If Americans believe, incorrectly, that the deficit is getting bigger, these same voters may be inclined to vote for candidates who’ll slash public investments and undermine social-insurance programs – which would have real-world consequences.
I would like folks to think about how they are building these new Affordable Care Act structures. As access for US adults and families becomes harder and harder----we are seeing more and more directional health care aimed at youth and community centers inside our schools. From serving 3 meals a day to having preventative health businesses coming to schools----all of this is happening because -----those health accesses now common in walking to a hospital or clinic are being dismantled. If we see global neo-liberal corporate education as building corporate schools on corporate campuses-----then we see the global 1% and their 2% are building what will be that only access to health care for workers and who will become that worker?
REMEMBER, CHILD LABOR IS TOPS IN FOREIGN ECONOMIC ZONES AND THESE VOCATIONAL RACE TO THE TOP SCHOOLS ARE CREATING THAT CONDITION FOR OUR CHILDREN.
Remember, human capital have children that belong to MASTER-----our vocational tracking of children geared towards global corporate campuses are already seeing these structures created.We see here University of Chicago home of hyper-neo-liberal economics and Obama--------and the concept of controlling all aspects of development in what will become workers
'Human capital is a term popularized by Gary Becker, an economist from the University of Chicago, and Jacob Mincer that refers to the stock of knowledge, habits, social and personality attributes, including creativity, embodied in the ability to perform labor so as to produce economic value.
Alternatively, human capital is a collection of resources—all the knowledge, talents, skills, abilities, experience, intelligence, training, judgment, and wisdom possessed individually and collectively by individuals in a population. These resources are the total capacity of the people that represents a form of wealth which can be directed to accomplish the goals of the nation or state or a portion thereof'.
The largest increase in health care funding was in MENTAL HEALTH-----the largest sector of brand name medical products is in MENTAL HEALTH------the creation of forced labor camps tied to REHABILITATION ------on global corporate campuses and global factories are what ONE WORLD ONE GOVERNANCE----MAKING NORTH AMERICAN FOREIGN ECONOMIC ZONES COMPETITIVE WITH ASIAN IS ABOUT.
We have a Congress and state houses under control of 1%Wall Street global corporations having absolutely nothing but PRAGMATIC NILISM on their minds----they are not left-leaning---no social benefit comes from these guys-----so please think beyond the immediate to see what these polices will look like if they continue to unfold.
New Behavioral Healthcare Center for Children Youth & Families on Lake Burien
Navos' new Behavioral Healthcare Center for Children, Youth & Families expands services for vulnerable children, youth and their families by bringing together programs provided by Navos and our partners, Ruth Dykeman Children's Center and Seattle Children's Home, in a compelling natural setting on Lake Burien. The mergers with legacy organizations Ruth Dykeman Children's Center and Seattle Children's Home, in 2010 and 2012 respectfully, have enabled us to broaden and deepen our child and family services and accelerate progress toward a more integrated delivery model of child and family services in King County.
Navos' new campus features a welcoming, camp-like atmosphere designed to reduce stigma and offer a unique array of programs that collectively address the continuum of complex needs of young children, school-aged youth, young adults and families in South King County. This is a safe, therapeutic environment where young children, who have suffered abuse, neglect and other significant traumas, and youth with significant mental and emotional illness, receive the treatment and support they need to heal.
The 7.5-acre Behavioral Healthcare Center campus includes:
- Outpatient programs for youth and families
- Housing and support services for young adults transitioning from foster care to independence
- Inpatient and residential programs for children and teens
- A school for youth in residential treatment
- Outpatient recreation areas
- Space for other youth service providers
- Studios for adjunctive therapies including art, dance and music
- A primary care clinic (OPENING SOON!)
Navos' new Outpatient Building is home to outpatient programs including individual and family therapy, drug and alcohol assessment and treatment, crisis intervention, support groups and behavioral support for youth with developmental disabilities. It will soon feature a primary care clinic to ensure that our youngest clients receive preventative and regular medical care.
Six new Youth Residential Cottages provide a home-like setting for children (aged 6-12) and teens (aged 13-18) with serious mental and emotional issues who are being served through Navos' residential programs. The design features day lit corridors, a porch connecting to the lake and a vegetated entryway, in dramatic contrast to the clinical feel of many similar facilities. The Residential Cottages have a total of 30 beds.
- Inpatient Treatment: Previously located at Seattle Children's Queen Anne Campus, this program provides intensive psychiatric treatment for youth ages 13-18 with serious mental health issues including schizophrenia, bipolar disorder and severe depression. These youth have exhausted less-restrictive treatment options. Navos operates only one of four treatment facilities in Washington's CLIP program (Children's Long-term Inpatient treatment Program). The average stay is nine months.
- Behavioral Rehabilitation Services (BRS): While the priority is to keep children in a home environment with family or other safe caregivers, for some children a residential program outside the home is safest. The BRS program serves children ages 6-12 who have been removed from their family or foster home because of abuse, neglect, unsafe behavior or violence. The children receive therapy, family counseling if appropriate, school advocacy, case management, recreational programming and discharge support. The average stay is seven months.
- Interim Care: Navos also provides a stable, therapeutic environment for children who need short-term care between the ages of 6-12. Children may come for a 30-day assessment, need care between placements or be able to benefit from short-term family separation and therapy.
Independence Bridge is a studio apartment housing complex for 24 young adults (aged 18-25) who are transitioning out of foster care, and could benefit from a safe and respectful community of peers as they establish a strong foundation for their independent adult lives. Every year in Washington, approximately 35% of youth aging out of foster care end up on the street during the first year.
Independence Bridge provides critical support during this transition through daylight-filled spaces for gathering and growth (including a library, common laundry rooms, a two-story communal kitchen and living area) and individualized support services encompassing:
- Mental health services
- Chemical dependency treatment
- Primary medical care
- Employment services
- Educational support
- Life skills mentoring
- Financial planning
- Legal advocacy
- Peer support
Madrona and Cedar
The existing Madrona and Cedar Buildings (totaling 30,000 square feet), were remodeled to include a school for youth in residential treatment; studios for adjunctive therapies including art, dance and music to enhance the healing process; and a space for community partners, creating a center for regional youth service provider collaboration
Navos thanks Mithun architects and BNBuilders for their partnership in the design and construction of the center. Their collaborative approach to creating a truly client centered, trauma informed environment will help to induce and enhance the recovery of vulnerable children and youth for many years to come!
We also thank the many individuals, families, corporations and foundations who invested in Navos new Behavioral Healthcare Center for Children, Youth & Families including:
- The State of Washington Building Communities Fund for awarding $2,000,000 to Navos to complete the second floor of the Navos Outpatient Building.
- M. J. Murdock Charitable Trust, Bobbe & Jon Bridge, Dave Gwinn & Karen Pederson, David Johnson, Ted & Jan McCaugherty, Nat & Poo Penrose, Allen & Kathleen Shoup, Grant & Nancy Silvernale and Fred & Jan Tompkins for their support of the Madrona Building Remodel Project.
- Jim & Geri Dykeman for their support and investment in this project.
- State of Washington-Housing Trust Fund, King County Housing Finance Program, King County Housing Authority, Fales Foundation trust, Kawabe Memorial Fund, Pink House Foundation Inc., Safeway Foundation and Tulalip Tribes Charitable Fund for their support of the Independence Bridge Project.
- D.B. & Ida J. McEachern Trust for their support of the Residential Cottages for Children and Youth.
- The instruments in the music room were donated in memory of Emile Beux, in recognition of his love of music and commitment to education and programs for children.
WE CANNOT RETURN TO OUR US LEVEL OF PUBLIC HEALTH BY FIXING AFFORDABLE CARE ACT---WE MUST KILL IT THEN CONTINUE EXPANDING AND IMPROVING MEDICARE FOR ALL.
We will end health care discussion with this---I think he is right on. One last issue----women's reproductive rights ----I have spoken how far-right authoritarian these 1% Wall Street issues are for the issue of population control and implanted remotely controlled microchips for birth control -----you better believe you won't need abortions with that implant! Right to Life of course would think this is extreme attack on life.
'The failure will be noticed when the new premiums are published on November 1, 2016, five days before we go the polls'.
This right-leaning commenter may not agree with all my stances but we do agree that none of this fixes our US health care or public health outcomes.
Hillary Clinton On Healthcare Reform
Stanley Feld M.D.,FACP, MACE
The next two blogs will review the published position on healthcare of Hillary Clinton and Donald Trump.
Obamacare has not been a big issue in the presidential campaign yet. It will become a big issue in mid October when the new premium schedules will leak to the press and by the November 1 publication of premium date healthcare will be a full-blown campaign issue.
Obamacare is on the verge of failure. Democrats are starting to talk up a Public Option as the Obamacare salvation. The Public Option is not going to save Obamacare.
The healthcare Co-Ops were supposed to provide a competitive force for the healthcare insurance companies to keep down the premium costs. However, 17 out of 22 have failed. The other five will fail before the end of the year.
The Public Option is a federally controlled competitive force. However, because of healthcare insurance companies distrust for the Democrats and Obamacare few insurance companies will show up to compete.
The presidential campaign has been such a circus that our attention has been diverted from healthcare.
The failure will be noticed when the new premiums are published on November 1, 2016, five days before we go the polls.
This late date has been set deliberately by the Obama administration in order not to give Americans enough time to respond with anger toward Democrats and the potentially new Hillary Clinton administration and vote her down.
Hillary Clinton’s website’s first sentence in her preamble on healthcare says it all.
“As your president, I want to build on the progress we’ve made with Obamacare.
She will build on Obamacare. Obamacare is a failure by all measures once we see through President Obama, Paul Krugman, and Ezekeil Emanuel’s lies. Why would anyone want to build on that failure?
Hillary supports President Obama’s call for a near tripling of the size of the National Health Service Corps. It will also triple the cost with not evidence that it will be successful.
“ I’ll do more to bring down health care costs for families, ease burdens on small businesses, and make sure consumers have the choices they deserve.”
It sounds like President Obama’s empty promise.
If you like your doctor you can keep your doctor.
If you like your insurance company you can keep your insurance company.
If you make less than $250,000 dollars a year you will not pay one red cent more in taxes.
“And frankly, it is finally time for us to deal with the skyrocketing out-of-pocket health costs, and particularly runaway prescription drug prices.”
This statement is important but is minor compared to what needs to be done.
The main body of Hillary Clinton’s position paper says the same thing. It does not give any details on how she will accomplish any of her promises.
Her campaign and the traditional media led by the New York Times have attacked every one of Donald Trump’s proposals because they claim he does not spell out how he would accomplish them.
Below are her website healthcare policies.
Defend and expand the Affordable Care Act, which covers 20 million people.
In 2016, Obamacare’s Health Insurance Exchanges insure only ten million people.
Most of those 10 million have a pre-existing illness. These people could not buy healthcare insurance on the private market. Eighty-five percent of those people receive government supplements. There has been no increase in Obamacare enrollment since 2014. There has been a lot of lying about enrollment yearly.
It would be less expensive if a system of care were developed to provide these people with medical care without the bloated bureaucracy and falsely promised insurance benefits.
The expansion of Medicaid eligibility decreased the uninsured an additional 10 million. With Hillary Clinton’s plan to increase Syrian immigration to 500,000 a year and provide them with Medicaid the failure of Medicaid will be accelerated.
Medicaid is another failed government program. Medicaid patients have difficulty finding a physician and have decreased access for medical care.
Bring down out-of-pocket costs like copays and deductibles.
Hillary Clinton offers no plan on how she is going to accomplish this.
Reduce the cost of prescription drugs.
Again, there is no explanation for how she is going to reduce these high costs.
Protect consumers from unjustified prescription drug price increases from companies that market long-standing, life-saving treatments and face little or no competition.
Promises, promises, promises with no explanation of a plan. It sounds great but there is no plan explaining fulfillment.
Fight for health insurance for the lowest-income Americans in every state by incentivizing states to expand Medicaid—and make enrollment through Medicaid and the Affordable Care Act easier.
President Obama and his administration have told us over and over again that it is easy to enroll in Medicaid and Obamacare. The Obama administration even pays enrollment navigators $48 an hour.
Expand access to affordable health care to families regardless of immigration status.
Hillary Clinton clearly has no regard for cost. She also wants to expand the immigration of Syrians to 500,000 per year. When this happens the cost of Medicaid will explode.
The federal government will eventually try to dump those costs on the states. Most states have budget deficits that have to be cured now.
Taxpayers will be forced to endure both federal and state tax increases for a failed federal program.
President Obama’s original promise is that the Affordable Care Act (Obamacare) will be budget neutral.
Expand access to rural Americans, who often have difficulty finding quality, affordable health care.
Hillary Clinton pledges to explore cost-effective ways to make more health care providers eligible for telemedicine reimbursement under Medicare and other programs.
Please notice she is only exploring the possibility of telemedicine reimbursement. Americans have heard empty promises before.
Defend access to reproductive health care.
Hillary will work to ensure that all women have access to preventive care, affordable contraception, and safe and legal abortion. This is not a promise. How she will accomplish this goal is not outlined.
Double funding for community health centers, and supports the healthcare workforce:
This is an initiative that is part of Hillary Clinton’s comprehensive healthcare agenda.
She is going to double present funding for primary-care services at community health centers over the next decade.
This is another ideological plan whose effectiveness has not been proven.
The goal of community healthcare centers is to provide low-level care for illness. It does not promote a patient/physician relationship or patient responsibility. It does not provide patient choice.
It is another step to commoditize medical care.
There you have it. Hillary Clinton’s healthcare policy as described on her website.
It is an extension of President Obama’s failed healthcare policy of the last 7 years. There is no mention of patients or their responsibility for their health or healthcare.
None of these proposals will lower the price of healthcare or increase the quality of care.
Hillary Clinton’s proposals will increase spending on a failed program (Obamacare) that has increased America’s deficit.
Hillary Clinton believes: “Together these steps will get us closer to the day when everyone in America has access to quality, affordable health care.”
I believe Hillary Clinton does not know what she is talking about. I know the American people are seeing what is happening to our healthcare system.
If you want more of Obamacare with its tremendous costs to individuals and the American people along with the lack of improvement in medical care vote for Hillary Clinton.
Hillary Clinton is a tax and spend progressive democrat who does not think about what consumers need. Her attitude is that consumers are not smart enough to choose.
She believes that the federal government knows best.
There is nothing in her healthcare plan to Repair the Healthcare System.
We are made to think there are Federal commissions filled with professionals across all health industries and of course those national corporate PATIENT'S ADVOCATE groups looking out for WE THE PEOPLE------but all these end of life policies have been written by the global corporate tribunal -----the ONE WORLD ONE GOVERNANCE wrote Medicare and Medicaid out over these few decades and these same policies are being installed in Foreign Economic Zones around the world----same policies for developing nations in Asia as for America-----\
This is what makes those global 1% and their 2% maximize their control of wealth------trillions of dollars are tied to public health---now heading to subsidize INNOVATIVE BIOTECH DESIGNER MEDICINE! Hmmmmmm, doing hospice by telemedicine-----I bet that is fulfilling!
A computer screen checks to see if you are dead yet and if vital signs disappear-----that telemedicine call center will call a coroner.
In order to help doctors practice EOLC better, the following educational material could be developed for use across the country:
- Algorithms for EOL decision-making
- Algorithms for management of EOL symptoms
- Framework for application of standard principles of ethics in EOLC
- Framework for surrogate decision-making in EOLC
- Framework for documentation of EOLC
- Standard formats for documenting FLST.
This is a very long article but please glance through-----it is critical to understand from where these global health policies come and what will change for WE THE PEOPLE!
End-of-life care policy: An integrated care plan for the dying
A Joint Position Statement of the Indian Society of Critical Care Medicine (ISCCM) and the Indian Association of Palliative Care (IAPC)
The purpose was to develop an end-of-life care (EOLC) policy for patients who are dying with an advanced life limiting illness and to develop practical procedural guidelines for limiting inappropriate therapeutic medical interventions and improve the quality of care of the dying within an ethical framework and through a professional and family/patient consensus process.
The Indian Society of Critical Care Medicine (ISCCM) published its first guidelines on EOLC in 2005  which was later revised in 2012. Since these publications, there has been an exponential increase in empirical information and discussion on the subject. The literature reviewed observational studies, surveys, randomized controlled studies, as well as guidelines and recommendations, for education and quality improvement published across the world. The search terms were: EOLC; do not resuscitate directives; withdrawal and withholding; intensive care; terminal care; medical futility; ethical issues; palliative care; EOLC in India; cultural variations. Indian Association of Palliative Care (IAPC) also recently published its consensus position statement on EOLC policy for the dying.
An expert committee of members of the ISCCM and IAPC was formed to make a joint EOLC policy for the dying patients. Proposals from the chair were discussed, debated, and recommendations were formulated through a consensus process. The members extensively reviewed national and international established ethical principles and current procedural practices. This joint EOLC policy has incorporated the sociocultural, ethical, and legal perspectives, while taking into account the needs and situation unique to India.
Keywords: Care of the dying, end-of-life care in India, medical futility, position statement, terminal care, withholding and withdrawing
Go to:Guidelines Summary
Physicians objective and subjective assessment of medical futility and the dying process
Recognizing medical futility and the dying process is the first step in providing end-of-life care (EOLC). A reasonable prediction of mortality is essential to identify the patients in whom EOLC discussions can begin. These should be based on the physician's objective and subjective assessment of medical futility and the dying process.
Consensus among all care givers
Once medical futility and the dying process have been identified, it should be followed up by discussions and formulation of consensus decisions among all caregivers about the poor prognosis of the patient and the plan to initiate an EOLC discussion.
Honest, accurate, and early disclosure of the prognosis to the family
The physician should make an honest, accurate, and early disclosure of the poor prognosis of the patient to the family and the patient if capable. He/she should discuss the imminence of death, clearly explaining the futility of any further aggressive medical therapies and the appropriateness of allowing natural death.
Discussion and communication of modalities of end-of-life care with the family
When the fully informed capable patient/family chooses to opt for the overall treatment goal of “comfort care only” option, the physician should explicitly communicate the standard modalities of limiting life prolonging interventions. These include: (1) Do not resuscitate (DNR); (2) withholding of life support or nonescalation; (3) withdrawal of life support.
Shared decision-making – consensus through open and repeated discussions
The physician must elicit and respect the choices of the patient expressed directly or through his family and work toward shared decision-making. In the shared decision-making model, the family discussions should include a review of the patient's present status and prognosis, elicitation of the patient's values, physician's recommendations, deliberations, and joint decision-making about ongoing levels of care. Pending consensus decisions or in the event of conflict with the family/patient the physician must continue all existing life supporting interventions and review the situation later.
Transparency and accountability through accurate documentation
The case notes should clearly reflect, through faithful recording, the entire or gist of all the discussions with the family, the decision-making process and the final decision based on medical appropriateness and patient's/family's preferences.
Ensure consistency among caregivers
Once a shift is made in the goals of care from cure to comfort, all members of the treating team should be aware of the plan for cessation of a disease specific therapy. The focus should be on keeping the patient pain-free and comfortable while limiting life-prolonging interventions.
Implementing the process of withholding or withdrawing life support
Once a shared decision has been made with the family and documented withholding or withdrawing of life support should be initiated. Before proceeding with end-of-life (EOL) measures, it is necessary to prepare staff, family members (patient if, capable), and the patient's environment.
Effective and compassionate palliative care to patient and appropriate support to the family
Provision of compassionate care at EOL is not mere control of physical symptoms, but involves respecting patient choices on preferred place of care and managing nonphysical issues such as psychological, emotional, spiritual, and existential distress.
After death care
Culturally appropriate and sensitive after death care should be provided to all the dying patients irrespective of the situation or the setting.
Bereavement care support
End-of-life care does not culminate at death but continues even after death. Bereavement care helps family/care giver to cope with grief and other issues.
Review of care process
Review of care process is an important quality assurance activity, which aims to review and reflect on the care provided and in turn improve the process of care.
- To develop an EOLC policy for patients who are dying with an advanced life limiting illness within an ethical framework and through a professional and family/patient consensus process
- To develop practical procedural guidelines for limiting inappropriate therapeutic medical interventions and improving the quality of care of the dying with compassionate palliative care and appropriate support to the family
- To improve awareness about EOLC issues among lay public, medical and paramedical personnel, lawmakers, and others concerned.
:Background“Death is not extinguishing the light; it is putting out the lamp because the dawn has come.”
- Rabindranath Tagore“Despise not death, but welcome it, for nature wills it like all else.”
- Marcus Aurelius“Dying can be a peaceful event or a great agony when it is inappropriately sustained by life support.”
- Roger Bone
Death is an inevitable part of life. Death may be the end-result of relentless progression of a chronic illness, for example, cancer, advanced chronic lung disease, heart failure, AIDS, nervous system disorders. Often death may be imminent in the short course of a severe acute illness, when all medical treatment including life-supporting interventions in an intensive care unit appears to be futile. Where medical treatment including critical care is unlikely to restore patient to a meaningful existence, it is the responsibility of the physician to provide effective palliative care. Indeed, access to palliative and EOLC is a human right. Everyone with a life limiting illness has a right to a life free from pain and distress, psychosocial or spiritual, and also the right to a dignified life that includes the process of death.
A significant number of patients die in hospital, and many of these are shifted to critical care units prior to death. It is important to realize that full treatment including all “Diagnostic and Therapeutic Strategies” and “Comfort Care” represents two ends of the continuum of care of a patient with a life-threatening illness. Both are appropriate at different points in the patient's disease process. At the EOL, however, life support interventions will not mitigate their suffering, but rather will add the agony and burden of a prolonged dying process. Death, which we all wish to be peaceful and to occur in the presence of loved ones, may become artificial, away from the family surrounded by the paraphernalia of modern critical care. In addition, most of the health care expenses are borne by patients and families, and inappropriate and aggressive medical interventions at EOL drain the resources of patients and family. Prolonged and futile life support has undoubtedly imposed enormous economic strains on patients and families. Nonavailability of EOLC and rising costs have forced up to 78% of patients to leave hospital against medical advice. The families unilaterally initiate these discharges resulting in these patients not receiving any symptom relief or EOLC measures.
In today's world, limitation of life-supporting interventions is being increasingly practiced, as physicians realize that the mission of intensive care includes the avoidance of inappropriate use of aggressive interventions. There are a few reports in the literature suggesting that withholding and withdrawal of life support is practiced in Indian intensive care units (ICUs). However, there are several impediments to implement EOLC in India. The approach to the patient is generally “paternalistic” as the concept of autonomy is weak in the prevailing cultural ethos. The physician's orientation by his training is only to a curative approach to disease rather than to one of palliation when the patient's prognosis is poor. The physician is generally fearful of being accused of providing sub optimal care or of possible criminal liability of limiting therapies. Adding to his dilemma, there is a virtual absence of ethical or legal guidelines relating to deaths in intensive care units in India. The recent judgment of the Supreme Court in the Aruna Shanbaug case recognizes the legality of withholding and withdrawal of life support, but unfortunately terms it passive euthanasia. In addition, it prescribes a procedure of securing approval from the High Court, which may be appropriate for a patient in a persistent vegetative state, but is totally unsuitable for a patient in whom death is imminent in a week or a couple of days.
The need for change, however, is of vital importance in India for several reasons. There is an unbearable financial burden to the average patient as healthcare expenses are borne mostly by the individual. Lack of appropriate policies for limiting life support make fair distribution of scarce facilities impossible in this populous country. Finally, a technologically prolonged dying process takes away the serenity and dignity accorded to it by the established cultural traditions and beliefs, and at some stage, it better to let nature take its own course. A report on a study by the Economist Intelligence Unit that was commissioned by Lien Foundation ranked EOLC services in 40 countries (30 OECD countries and 10 select countries), from which data were available. The outcomes of quality of death index showed that India ranked the lowest, 40 out 40 in EOLC overall score. There is thus, an overwhelming need for a national palliative care initiative to bridge these gaps.
The Indian Society of Critical Care Medicine (ISCCM) was instrumental in initiating discussions on EOLC in advanced critically ill patients. Initial work, published in 2005, spelt out, for the first time ethical guidelines on limiting life-prolonging interventions and providing palliative care toward the EOL, for Indian ICUs. The consensus ethical statement on guidelines for EOL and palliative care in Indian intensive care were published in 2012 following the Aruna Shanbaug judgment. Recently, the Indian Association of Palliative Care (IAPC) published its position statement called “An EOLC policy for the dying”. This document recognized that delivery of palliative care at the EOL was suboptimal in India. It aims to address this problem by advocating for patients with EOLC needs, identifying gaps in service provision, and bridging these gaps by improving awareness, persuading the government to formulate a supportive legislation and EOLC policy, promoting EOLC education in health curricula, creating standards and implementation, and monitoring of these standards. While all efforts are being made by the Government to create and roll out a National Strategy for Palliative Care the IAPC is committed to the “Position Statement” and recommends that it is the basis for a palliative and EOLC policy for the dying in all health care set ups in India.
There has been a fresh debate on the legal position of “passive euthanasia.” The discourse is often marred by emotive speech and extreme positions taken by advocates at either end of the spectrum of the debate confined to euthanasia; in the process, the major issues relating to patient care and comfort and the process of a good death have been ignored.
In this setting, two medical professional societies, the ISCCM and the IAPC, that are confronted with these issues on a daily basis, have produced a joint statement on the EOLC policy: An integrated care plan for the dying. This joint statement reviews the medical, ethical, and legal framework on which EOLC decisions can be made, and how the best EOLC may be provided to patients in India. This statement will not only provide guidance to medical practitioners, but will hopefully be widely disseminated to members of the lay public, social workers, patient advocates, public health professionals, Medical Council of India (MCI), lawmakers, Government officials, and policy makers, among others. This document will undoubtedly add a fresh perspective to the current debate and provide a point of view that recognizes the rights and welfare of the dying patient.
Go to:1.0 End-of-Life
CareEnd-of-life care is multidisciplinary team approach toward “whole person care” for people with advanced, progressive, incurable or life limiting illness so that they can live as well as possible before they die. The process of care is not just limited to the person who is dying but extends to his/her families and caregivers.
1.1 Objectives of end-of-life care 
- To achieve a “good death” for any person who is dying, irrespective of the situation, place, diagnosis, or duration of illness
- Emphasis on quality-of-life and quality of death
- Acknowledge that good EOLC is a human right, and every individual has a right to a good, peaceful, and dignified death.
1.2 Principles of good death [3,13]Principles of a good death involve the ability to know when the death is approaching; have physical symptoms well-controlled and nonphysical needs met, right to die in a dignified manner at the place of choice and life not needlessly prolonged with artificial means [Table 1].
Principles of a good death
1.3 Components of good death The components of a good death from patients, families, and providers through focus group discussions and in-depth interviews identified six major components. They were pain and symptom management, clear decision-making, preparation for death, completion, contributing to others, and affirmation of the whole person. Themes identified had biomedical, psychological, social, and spiritual components [Table 2].
Components of good death
1.4 Continuum of palliative careHealth care providers often perceive that palliative care referral is appropriate only when patient is dying. This limitation excludes majority of patients who are not dying but has poorly controlled symptoms and distress that could lead to abrupt transition of care from curative to palliative phase. Hence, it is important to consider the continuum of palliative care proposed by World Health Organization. Palliative care referral is best initiated early, often at the time of diagnosis. Ongoing palliative care input can be provided according to the needs and a smooth transition from curative to palliative phase is facilitated. Continuum of palliative care supports the patient and family during EOL phase, process of dying and supports the family during the after death phase and bereavement period [Figure 1].
Representing the continuum of palliative care and end-of-life care in an illness trajectory (Modified from http://depts.washington.edu/pallcare/training/ppt.shtml)
1.5 Steps of end-of-life care process The process of providing a good EOLC follows a sequential series of steps which involves recognizing the dying, EOLC decision-making and communication and initiation and provision of EOLC [Table 3].
Six-step approach in EOLC process
1.6 Infrastructural requirements for good end-of-life care
The presence of EOLC infrastructure is essential in all hospital/health care settings across India. Infrastructural requirements for good EOLC primarily require the presence of an overarching hospital policy that supports and guides the healthcare providers in good EOLC process. There is a need for dedicated healthcare providers trained in palliative and EOLC, dedicated space in the hospital for EOLC provision, standardized forms/patient information leaflet and on call special support staff such as clergy, clinical psychologists [Table 4].
Infrastructural requirements for good end-of-life care
Go to:2.0 The Legal Position in India
In India, legal guidelines and provisions clarifying moral/ethical dilemmas around EOLD do not exist at present. Much debate has centered on the issues of euthanasia, suicide, and right to life. Clear separation of euthanasia from foregoing of life support treatments (FLSTs) that is well-settled in the developed world has not yet been acknowledged. Case laws and precedents are few and have been none in the context of life sustaining interventions.[17,18,19] However, the amicus curiae in the Aruna Shaunbag case pointed to the fact that in some countries stopping (or not starting) a medically useless (futile) treatment, and stopping or not starting a treatment at the patient's request is considered normal medical practice. The issues of patient's self-determination, futility, brain death, FLST, safeguarding of rights during incapacity, death in dignity, right to palliative care, and withdrawal of nutrition/hydration have not been addressed and clarified. The Indian physician, therefore, finds himself in an ambiguous position with respect to civil, criminal, or consumer protection laws.
2.1 Existing legal provisions
Common law confers the right to informed consent or refusal, which applies, to all medical interventions. This alone would suffice for an FLST decision. The case of Rathinam allowed the right to die when faced with intolerable suffering thereby invalidating the suicide laws. This opinion was superseded by the Kaur judgment wherein, the Supreme Court ruled that the constitutional right to life enshrined in Article 21 cannot be interpreted as a right to take one's life. This law has been inappropriately invoked to interpret all FLST decisions as attempts at suicide. It should be noted that the case was in relation to suicide and abetment to suicide, not to critical illness requiring life support interventions. Significantly, in the latter case, the judges made an exception in the situation of the dying patient allowing a “dignified process of death,” but did not expand further on the issue.
2.2 Law Commission reportThe Law Commission of India in their 196th report clearly separated euthanasia from EOLD. Euthanasia is defined as the administration of a lethal drug by a physician as an act of mercy at the patient's request. FLST decisions differ fundamentally as it is only “letting die” - a decision not to intervene in a dying process already started. It pronounced FLST as lawful when a capable patient refuses treatment. Refusal to accept medical treatment does not amount to “attempt to commit suicide” and endorsement of FLST by the physician does not constitute “abetment of suicide”.
The Law Commission, however, did not empower the family with the right to act on the patient's behalf when he/she is incapacitated. This would render EOLD difficult in the ICU setting when 95% of the patients are known to lose the capacity to take their own decisions. Advanced will was also disallowed for fear of “misuse” which means that advance care planning, preparing patient for anticipated death, allowing patients the opportunity for life closure and eliciting their preferences would not be possible.
A second report of the Law Commission in 2012 in the wake of the Aruna Shaunbag judgment, endorsed the reforms suggested in the first report. It said “passive euthanasia” should be allowed on humanitarian grounds and for protecting doctors who genuinely act in the best interests of patients. It endorsed safeguards suggested in the Aruna Shanbaug, but for procedure they concurred with the previous report of the Law Commission.
2.3 The Aruna Shaunbag caseIn the Aruna Shaunbag case, the judges pronounced “involuntary passive euthanasia” to be lawful under certain strict safeguards. The term of reference was the not the rights of a vegetative patient but whether euthanasia was constitutionally allowed. It did not, therefore, touch upon several of the grey areas mentioned above. The definition of passive euthanasia was not in consonance with current medico legal literature and is thus subject to misinterpretation. The Court did rule that withholding or withdrawal of life support was not illegal, and should be allowed in certain circumstances. A court procedure was recommended for all EOLD on incapacitated patients that would be practically impossible to implement in emergency and critical care situations. The procedure, thus is applicable only for chronic vegetative states where life support institution/withdrawal was not in question.
2.4 Possible misuse/inappropriate use of end-of-life care provisionsAs with any medical decision, EOLD could be applied inappropriately through an error of judgment or deliberately for a vested interest. Patient may be deemed to be facing death without the usual exploration of diagnostic and prognostic pitfalls, thus foreclosing treatment options prematurely. Such decisions may also be resorted to in order to find easy solutions to dilemmas like inability of the family to meet mounting expenses. Finally, it may be possible (but there exist no case examples) to use such decisions to deny appropriate care to a critically ill patient with a criminal intent. EOLD should always be evaluated against “acceptable standards of care” and the tests of “professional negligence.” On the other hand, motivations for instituting disproportionate interventions are even more as revenue from healthcare is linked to instituting treatments and procedures. For this reason, in many countries, standards of care and legal requirements include discussion of EOLC in chronic debilitating diseases. Errors of judgment are an inherent risk with every medical decision and are not peculiar to EOLD. Therefore, the potential for misuse of FLST should be balanced against that of inappropriate interventional decisions.
2.5 Professional safeguards against misuseProfessional guidelines and standardized decision tools are designed to improve physician skills and minimize errors of judgment. The guidelines of the ISCCM clearly spell out the deliberate and careful steps to be followed. These decisions should be made by the senior most physician of the care-giving team. As a “responsible body of medical persons” is required for EOLD on incapacitated patients, more than one physician should be involved. Documentation should be explicit, complete, and mandatory for such decisions to prevent poorly judged decisions or foul play. Finally, as with other medical decisions, EOLD should be subject to audit for compliance with quality standards. A local oversight committee could be made mandatory as for the approval of an organ donor. Professional training should include skills in EOLC as clearly defined by European training modules for intensive care specialists (CoBaTRICE).
2.6 Current legal proceedingsA petition was filed by an NGO named “Common Cause” for declaring “the right to die in dignity” as a fundamental right and thereby also permitting Living Will and attorney authorization. In response, the Chief Justice of India has appointed a five-judge Constitution bench to look into the issues around euthanasia and death in dignity as in his opinion the Aruna Shanbaug judgment appeared ambiguous. The ISCCM has filed an “impleadment petition” as a party respondent in the above writ petition.
Go to:3.0 The Ethical Principles of End-of-Life DecisionsCompliance with an established code of ethics is essential in medical practice. Ethical requirements for EOLD are more complex but the essentials remain much the same. The four fundamental principles of autonomy, beneficence, nonmalfeasance, and social justice have to be carefully interpreted and translated in practice.
3.1 AutonomyAutonomy means respecting patient's choices and preferences. This translates in practice as the right of informed consent or refusal. For any medical intervention except in special circumstances, a consent form needs to be signed by the patient or surrogate. This should equally apply to life prolonging interventions. Physicians are by common law bound to respect patient's refusal who has received complete information even if this would lead to his or her death. The physician's approach should, thus be to address the patient as a whole person than merely as a disease entity. Open and complete disclosure of information is, thus an essential part of empowering the patient in taking an autonomous decision. To be able to exercise his/her autonomy directly the patient should be mentally competent to identify and express his/her choices. If the patient has lost capacity, the right of autonomy is maintained through other means. His/her preferences are to be elicited from the next of kin or a duly appointed legal representative and are termed as “substituted judgment”. An advance Will as permitted in US law documents patient's preferences in times of full mental capacity and is to be taken into account in EOLD by caregivers. In case patient's wishes and preferences are unknown the patient surrogate and the physician is expected to act in his/her “best interests”.
3.2 BeneficenceBeneficence flows from the fiduciary obligation to act always in patient's best interests. While the disease can still be cured or controlled, this obligation translates as the need to carefully weigh the risks and benefits of any intervention. In terminal illness, since benefits of a curative intervention are negligible, FLST is often in patient's best interest. This is even more so when patients' values and preferences suggest that such interventions are unwanted. Best interests also include protecting him/her and the family from economic or social difficulties when these are clearly expressed. Physician's insisting on continuation of futile therapies is, therefore, to be regarded as violation of this principle.
Nonmalfeasance comes from the doctrine of “first of all do no harm.” However, this needs to be interpreted appropriately in terminal illness. Harm confined only to the physiological standpoint would be too narrow an interpretation. A dying patient and family should be given the opportunity to prepare for death. An appropriate environment for ensuring good death should be made available. All the while whole person interests should be safeguarded. The family too must be protected from harm that may accrue from incomplete information, financial pressure of disproportionate treatments, and posttraumatic stress disorder from inadequate attention to counseling during the dying process and bereavement.
Freedom from pain and distress is a fundamental right and withholding adequate palliative therapy would violate this principle. The doctrine of “double effect” addresses the situation when adequate analgesia and sedation may have the unintended side effect of shortening the dying process. This principle clearly sets the obligation to provide freedom from pain and distress above the principle to do no harm provided the harm is unintended. Intention is revealed in the care taken to titrate the drug dosing which would mean that protocols for palliative therapy should be in place and documentation should be meticulous. Of course, doses beyond usual recommendations should be adequately justified.
3.4 Social justice
Social justice means allocating resources appropriate to the medical condition of the patient in order to maximize their benefits and minimize wastage. Futile application of therapies would clearly violate this social obligation. Situations may arise when patient or family may insist on therapies physicians would consider inappropriate, when the principles of autonomy and justice may appear to be in conflict. In such an event, repeated communication and negotiating a middle path may be the best course. It would also be worth remembering that the physician is bound to act only according to professional standards of care and not obliged to follow blindly the dictates of the patient.
Communication during End-of-Life Discussions
The purpose of doctor-patient communication is to establish the therapeutic doctor-patient relationship. The firm establishment of this relationship is vital to a good therapeutic outcome irrespective of whether the patient survives or not. A good therapeutic outcome in EOLD may be characterized as one in which the patient and/or the family understand the disease process in question, the likely prognosis, the time that is available to the patient and family and the comfort care options that are available.
4.1 Goals of communication during end-of-life discussions
- Establishing consensus about the disease process among care givers
- Providing accurate and appropriate information about the disease process to the family
- Eliciting and resolving the concerns prompted by the EOLD.
4.1.1 Establishing consensus about the disease process among caregivers
Many health care professionals are usually involved in the care of acutely ill patients including the intensivist, the primary care team and the specialists to whom the patient may have been referred. The doctor under whose care the patient is admitted assumes primary care for the patient. In closed units, this doctor is the intensivist but more often than not units in India are semi-open, semi-closed, or open in which case the primary physician is from the respective specialty. Each specialist is likely to have differing opinion about futility and about when to start EOLD. The intensivist often has to assume the role of coordinator and communicate with all stakeholders in order to arrive at a consensus. This is a painstaking and arduous process. It is a good plan to schedule a meeting among all significant caregivers and establish a consensus before starting EOLD with the family.
4.1.2 Providing accurate and appropriate information about the disease process to the family
Once consensus is established among the caregivers, the intensivist schedules a meeting with all significant family members including friends.
4.1.3 Eliciting and resolving the concerns that are prompted by the end-of-life discussion
The communication skills required by a physician for eliciting and resolving concerns prompted by EOLD are:
- The ability to distinguish between intellectual and emotional components of what the patient or family says during the EOLD and to respond to this sympathetically
- The ability to clarify uncertainties and doubts. This includes being able to talk to the patient or the family about what the physician has understood about the patient's or family's perspective and also about the physician's perspective itself
- The ability to listen more and talk less. Typically, the physician should spend more than 75% of the interview in listening empathically.
In case one is left with lingering doubts or uncertainties more meetings could be offered for sorting these out before an actual EOL decision is taken.
Nonverbal communication may be as important as verbal communication during EOLD. The acronym SOLER stands for a method that the physician can use for nonverbal communication.
S Face the patient/family S quarely at eye level to indicate your interest and involvement
O Adopt an O pen body posture (do not cross your arms, do not sit across the table)
L L ean toward the patient/family
E Use E ye contact to show that you are paying careful attention (do not look at your watch or be distracted by your mobile phone)
R Maintain a R elaxed body posture.
4.2 Physician style of communication Certain physician characteristics may help or hinder communication during EOLD. These have been described as physician styles during communication.
The inexperienced messenger
Information is delivered fast with no warning and with no understanding of the specific medical, psychosocial, spiritual, or emotional issues involved in EOLD. Patients or family will perceive this as a junior inexperienced doctor without empathy.
Emotionally burdened expert
Communication is careful and good but doctor comes across as someone who is too involved and under emotional strain.
Rough and ready expert
Delivery of information is quick, clear, and delivered in terse sentences with closed body language. Listening is minimal and patient/family emotions are not acknowledged. Doctor is perceived by the patient/family as unemotional, uncaring, and lacking respect.
Benevolent but tactless expert
Information is conveyed competently with a sympathetic attitude but there is a lack of ability to pick up emotional verbal and nonverbal cues from the family. The doctor comes across as someone who is well-meaning but without an understanding of the family or patient situation.
Information given is to the point, precise, and is delivered calmly in an objective manner. There is a lack of emotional involvement and the expert tends to avoid emotional and psychosocial issues. Patient/family perceives the expert as someone who was disinterested and did not really care about the patient as a person with hopes and feelings.
Information delivered with the right mix of empathy and medical competence. This physician is able to read both verbal and nonverbal cues from patient/family and is able to address practical and potentially distressing concerns well family perceives the physician as one of their own and someone who is able to put himself in their own shoes and yet able to offer an unbiased and correct opinion.
4.3 Patient/family-centered communication
The empathic professional is able to provide the most appropriate information, is able to elicit patient's/family's expectations and concerns, their preferences for therapy and is able to provide support and guidance through the entire EOLD. In short he is collaborative, concerned with the patient as a person, and is able to think from the patient/family perspective. The communication skills described before can help the empathic professional achieve this goal of patient/family-centered communication.
These skills include active communication skills such as being attentive and focusing on the here and now, listening to both verbal and nonverbal cues, showing interest through appropriate speech and body language, having ability to restate and clarify patient/family position. One should be careful not to interpose one's personal opinions/biases to influence the family. Communication should empower the family to implement what they perceive to be the patient's wishes and finally be able to lead the EOLD to a fruitful mutually acceptable plan. More often than not it is the family that participates in EOLD and a useful mnemonic for valuing and understanding the family is presented below.
The VALUE Mnemonic
V Value statements by family members
A Acknowledge family member emotions
L Listen to family members
U Understand who the patient is as a person and how decisions are made in the family
E Elicit questions from family members.
4.4 The SPIKES approach to patient/family centered communication A useful mnemonic for this whole process of empathic reflective communication is “SPIKES”.
Setting up the environment is important. Having a quiet room with comfortable seating that provides privacy is very important. Adequate time must be set aside for the meeting and there should be no disturbances during the meeting.
Patient's/family's perceptions regarding the progress so far and their understanding of the illness must be assessed before proceeding to the EOLD. One may also ask regarding their discussions with other physicians including their primary care physician. This gives us an idea of how prepared the family is likely to be during EOLD. It also allows us to confirm the consensus among caregivers through the family.
One must confirm that the patient wishes to receive information about the diagnosis and prognosis. Sometimes, patients are not ready and this must be kept in mind.
Regarding the illness and the likely prognosis are given in a language that is understandable to the family.
It is provided by identifying the emotion that the patient/family expresses and by responding to it appropriately.
Strategy and summary
At the end of the meeting, one summarizes the current situation, explains the future plan for comfort care, and documents the EOLD accurately.
4.5 Conflict during end-of-life discussions
Conflict at a personal level arises when there is a gap between “what is” and what the person/s feel/s “should be.” Conflict during EOLD is not only at a personal level for all involved individuals but also at an interpersonal level within family, within healthcare team and may lead to conflict between family and health care team.
“Conflict during EOLD” is broadly defined as failure to achieve consensus on the goals of care and related treatment at the EOL despite allowing time (usually 48 h) and holding repeated discussions between involved parties (conflict resolution in EOL settings - a report NSW Department of Health).
Many patient/family factors, physician/healthcare team-related factors and the environmental factors that may be responsible for conflict during EOLD [Table 5].
Various factors that may be causative for conflict at EOLDHow to resolve conflict at end-of-life discussions?
Empathy, trust, and hope are the three pillars on which an effective patient-family-doctor relationship rests. Empathy not only requires a deep understanding of the patient/family perspective but also a deep self-awareness on the part of the physician. Trust is built on honesty and understanding and is vital for taking the EOLD to a fruitful conclusion. Hope on the part of the patient/family needs to be understood and valued by the physician.
Conflict usually arises when the patient/family requests the physician/healthcare team that everything be done and the physician/healthcare team face medical or physiological futility in treating the patient. This can usually be resolved by frequent and repeated family conferences held by empathic professionals who are able to convey in simple terms the consensus in the healthcare team about the disease process and the likely prognosis. A second opinion may be requested either by the family or by the empathic professional if a consensus is elusive. It is only very rarely that legal recourse would be needed for resolving conflict at the EOL.
Go to:4.6 Conclusion
End-of-life discussions are difficult for all the people involved. Patients and family are very sensitive to verbal and nonverbal cues during these discussions. It is incumbent on the physician/healthcare team to train themselves in active listening skills, correct body language, and appropriate empathic responses in order to convey information in a clear, concise, and empathic manner. This will allow creation of a therapeutic plan that is appropriate and results in a good outcome for all concerned.
Prevention of Intensive Care Unit Admissions in Palliative Patients
Guidelines for ICU admission, discharge, and triage have prioritized ICU admission criteria under prioritization model as priority 1-4. The 4b priority includes all palliative patients who are not candidate for ICU admission. Under 4b priority are patients with terminal and irreversible illness facing imminent death (i.e. too sick to benefit from ICU care) [Table 6].
4b priority patients
Prompt identification of this subset of population is essential to prevent any malfeasance. Patients, families, and health care providers should be educated about appropriateness of ICU admission, nature of ICU interventions including resuscitation, outcomes and futility of these interventions, and detailed information on alternatives to ICU admission. Good palliative and EOLC are not just the alternative, but also a superior and most appropriate mode of treatment when compared to inappropriate ICU admission.
Go to:6.0 Guidelines for End-of-Life Care Process [Figure 2]
End-of-life care process pathway modified with permission
6.1 Guideline 1Physician's objective and subjective assessment of medical futility and the dying process
Recognizing medical futility and identifying the dying process is the first step toward planning and delivering effective EOLC.
It is not always easy to recognize “medical futility” and whether the patient is going through the dying process. Identifying these situations often needs experience and expertise. Sometimes, the clinician's judgment may be influenced by his own biases and attitudes toward death. A reasonably good prediction of mortality is essential to identify the patients for whom EOLC discussions can begin. These should be based on the physician's objective and subjective assessment of medical futility and the dying process.
6.1.1 The dying patient
Clinicians should be able to diagnose the dying patient with a fair amount of accuracy in order to ensure that good quality of EOLC is provided for all those who need it and also to identify when restorative treatment aims are appropriate.[37,38] Recent reviews of the Liverpool Care Pathway have highlighted the complexity of diagnosing dying and recommend the need for development of clear guidance for professionals and further research in diagnosing dying.[39,40] A recent review examined evidence available on how clinicians judge patients as being in the last hours or days of life concluded that there is uncertainty in diagnosing dying and the need to work with and within this concept. As it is not always easy to predict impending death, and the best approach is to correct the correctable while accepting that the patient might be dying.
6.1.2 Medically futile/inappropriate
The idea of futility is not new. The famous Hippocratic corpus included a promise not to treat patients who were “overmastered by their disease.”
Various definitions and subtypes of futility
- Physiological futility - Treatment that cannot achieve its physiological aim
- Quantitative futility - Treatment that has < 1% chance of being successful
- Qualitative futility - Treatment that cannot achieve an acceptable quality-of-life, treatment that merely preserves unconsciousness or fails to relieve total dependence on intensive care
- Lethal condition futility - The patient has an underlying condition that will not be affected by the intervention and which will lead to death within weeks to months
- Imminent demise futility - An intervention that will not change the fact that the patient will die in future.
Since the term “futile” has been difficult to define, and has negative overtones, some have suggested that this term should not be used at all when talking with families. “Medically inappropriate” may be a more suitable term, since it makes it clear that these are judgments made by doctors and avoids the pseudo-objectivity sometimes implied with the term “futile.” Furthermore, referring to the inappropriateness of treatment highlights the importance of clarity on what treatment is appropriate.[47,48]
Perceived futility remains the most common justification for withdrawal of treatment in critically ill patients.[49,50] A study that looked at intensivists' ability to predict outcome in a neurosurgical patients who were ventilated for longer than 72 h, showed that they had a high level of accuracy at predicting poor outcome (moderate or greater disability, or death). About 94% of those patients in whom a poor outcome was predicted either died or were significantly impaired at 6-month follow-up. A recent review systematically looked evidence used to support or refute claims of medical futility. Less than 1/3 of studies, which showed that treatment was futile, actually met the common standard for quantitative futility. Many studies lacked the criteria for determining whether or not the treatment was futile.
However, sufficient and conclusive data from evidence-based medicine on futility are to some extent still lacking. Until this is available, physicians may have to rely on their professional judgment and consider patient autonomy to make an informed shared decision. The limits of futility will also change with the available facilities and with the evolution of medical science. Futility usually focuses on the principles of improving the rate of survival and the quality of prolonged life. Physicians should consider whether further treatment will abide by these two principles, and if not, futility ensues. It is ethical for physicians to decline to provide treatment, which is judged to be medically inappropriate, either where such treatment is not in the interests of the patient, or where there are insufficient resources to provide treatment of this level of benefit.
Recognizing medical futility:
- The following table can serve as a guide to recognize medical futility. However, these points should not be used in isolation, but in the context of the clinical status and condition of the patient. Whenever there is doubt about the prognosis, the physician should not take any hasty decisions, but wait for the disease process to unfold [Table 7]
Recognizing medical futility
- Recognizing the dying patient: [Table 8] These following physiological changes are mere pointers to suggest poor prognosis and very limited life expectancy and may not always suggest that the patient is dying.
Recognizing that the patient is dying
In the intensive care unit, patients who are sedated and on a ventilator may not show many of these signs and symptoms.
6.2 Guideline 2Consensus among caregivers
Once medical futility and the dying process have been identified by a member of treating team, it should be it should be followed up by discussions and formulation of consensus decisions among all caregivers about the poor prognosis of the patient and the plan to initiate an EOLC discussion. The overall responsibility for the decision to initiate an EOLC discussion rests with the attending physician of the patient, who must ensure that all caregivers including the medical, nursing staff, and other paramedical staff are in agreement.
There should be consensus among all caregivers. It is essential that all members of the team are fully aware and in agreement of the patient's prognosis and the plan to initiate an EOLC discussion. This will help prevent any conflicting or inconsistent messages about the patient's prognosis going out to the patient's family. One of the well-known sources of family dissatisfaction is inconsistency of information given by caregivers.
- A consensus should be reached among the treating teams about the patients poor prognosis and plan to initiate an EOLC discussion
- If there is any difference of opinion among the members of the treating team regarding the prognosis of the patient, the decision to initiate an EOLC discussion should be deferred and the situation should be reviewed again later as the clinical state unfolds. Inputs from experts should be taken if required
- The senior treating physician responsible for the patient, should take the lead in addressing all caregivers about the prognosis and plan to initiate an EOLC discussion
- No member of the team should address the family individually regarding the patient's prognosis until a consensus is reached among all caregivers.
6.3 Guideline 3Honest, accurate and early disclosure of the prognosis to the family
The physician should make an honest, accurate, and early disclosure of the poor prognosis of the patient to the family and the patient if he is capable. Clear, candid communication is a determinant of family satisfaction during EOLC. The physician should discuss the imminence of death, clearly explain the futility of any further aggressive medical therapies and the appropriateness of allowing natural death. Clinicians should recognize that the family members of the patient are often “living with dying” as they are maintaining hope though faced with uncertainty. Though “hope” should be respected during prognostic disclosure a realistic view should be maintained (refer to communication during EOLD).
Respect for the patient's autonomy and to act in his best interest are the basis for providing accurate information The physician has a moral and legal obligation to disclose to the family, with honesty and clarity, the dismal prognostic status of the patient, the imminence of death, and that further aggressive support may be futile. Waiting, watching, and postponing discussions on prognosis of the patient will only increase the stress to the family and the caregivers.
- It is helpful to identify early a responsible family member as a surrogate decision-maker for the patient for regular communication, who will in turn communicate your discussion with the rest of the family (if the patient is not capable)
- The “family” means spouse, parents, children, siblings, the next of kin who is available or even a trusted friend. A hierarchy of surrogates does not exist in Indian law for making EOLD
- If feasible as many members of the treating team along with the primary physician should jointly address the family
- Avoid addressing different family members at different times to avoid any inconsistencies in communication
- Give as accurate a prognosis as is possible in a language and in terms that the family can understand
- Inform the family the diagnosis, prognosis, the range of therapeutic interventions available as well as the option of no therapy, including their risks, benefits, costs, and consequences.
6.4 Guideline 4Discussion and communication of modalities of end-of-life care with the family
When the fully informed capable patient/family chooses to opt for the overall treatment goal of “comfort care only” option, the physician should explicitly communicate the standard modalities of limiting life prolonging interventions.
6.4.1 Standard modalities:
The following three standard available options for limiting the supports (also called FLST should be discussed with the family:
- Do not intubate (DNI)/DNR: Aggressive ICU management up to, but not including endotracheal intubation (DNI) or attempts at CPR (DNR)
- Withholding of life support/no escalation order: The considered decision not to institute new treatment or escalate existing life support modalities (intubation, mechanical ventilation, vasoactive drugs, dialysis, antibiotics, intravenous fluids, nutrition, etc.) with the understanding that the patient will probably die from the underlying condition
- Withdrawal of life support: Withdrawal of life support is the cessation and removal of an ongoing medical therapy, with the explicit intent not to substitute an equivalent or alternative treatment. It is fully anticipated that the patient will die following the change in therapy primarily due to the underlying disease conditions.
The capable patient/family should be informed and made to understand the various standard modalities of EOLC available to him/her and their implications. This will help in the process of reaching a consensus through shared decision-making.
6.4.2 Other modalities
Active shortening of the dying process
Deliberate administration of large doses of drugs (barbiturates and morphine) until death ensues.
Physician assisted suicide
A medical doctor provides patients with means to kill themselves.
Analgesics and sedatives are used during EOLC to ensure that no patient dies in pain or distress. However, in high doses these may produce side effects that may hasten the dying process. Physician-assisted suicide should to be distinguished from these, since the primary goal of the therapy is to relieve pain and discomfort and hastening of death is not intended. Quill and associates termed it “the double effect” to distinguish the intended and unforeseen effects. Suicide and abetment to suicide are declared punishable by the Indian Penal Code.
Euthanasia is intentional killing of a patient by the direct intervention of a doctor, ostensibly for the good of the patient or others.
The recent Supreme Court judgment of the Aruna Shanbaug case recognizes the legality of withholding and withdrawal of life support, but unfortunately terms it passive euthanasia and prescribes a procedure of securing approval from the court. This may be appropriate for a patient in a persistent vegetative state, but is not feasible in a patient in whom death is imminent in a week or a couple of days (see section on legal position in India).
6.4.3 Discharge/left against medical advice (DAMA/LAMA)
This refers to a unilateral withdrawal decision by the family mainly due to unbearable financial and other burdens.[5,59] Physicians may at times endorse this practice as the only way to prevent perceived social and legal complications of making an EOLC decision. This practice should be discouraged as the patient has a miserable death without any palliation.
6.4.4 Brain death
Brain death is an irreversible cessation of all functions of the brain including the brainstem. This category does not include patients who maintain brainstem function, such as patients with persistent vegetative state. In the US, brain death is death. In India, brain death was initially defined only for the purpose of beating heart organ retrieval in the Transplantation of Human Organ Act 1994. Outside of this context, in the Aruna Shanbaug case, the judges have ruled that brain death is equivalent to death (p. 52, Art 103). In the opinion of the committee, there should no longer be any ambiguity in this regard in physicians' communication to the patient's family.
6.5 Guideline 5Shared decision-making - consensus through open and repeated discussions
The physician must elicit and respect the choices of the patient expressed directly or through his family and work toward shared decision-making. Surrogates need to free from anxiety and depression and be well informed in order to function effectively as decision-makers for the patients. In the shared decision-making model, the family discussions should include a review of the patient's present status and prognosis, elicitation of the patient's values, physician's recommendations, deliberations, and joint decision-making about the level of limiting therapy.
Through a shared decision-making process the physician would ensure respect to the patient's autonomy in making an informed choice, while fulfilling his obligation of providing beneficent care.
Decision-making models vary across the world, however, the trend is toward a shared decision model.[20,26,60] One extreme is the traditional parental approach, where physician shares information but takes the primary responsibility for decision-making. The other extreme is when the patient makes the decisions, and the physician has an advisory role. In North America and in some parts of Europe, the shared decision-making model is used where the physicians and patients or their surrogates share information and participate jointly in decision-making. In a multicenter survey in North India which was a customized version of the modified Molter's questionnaire, interestingly, of the five domains in the instrument (information, comfort, support, assurance, and proximity), the priority for the Indian family appeared to be information needs (e.g., details of patient's condition and discussion on prognosis) as opposed to assurance needs (e.g., that patient is well-cared for, having hope) for the American family.
Family members may lack confidence in their role as decision maker, if they have had no previous experience as a surrogate or no prior dialogue with the patient about treatment preferences. The burden of decision-making is a silent source of strain among family members of dying patients in the ICU. Anxiety and depression are also prevalent in half the patients' families.[54,65]
Pending consensus decisions or in the event of conflict with the family/patient the physician must continue all existing life supporting interventions. The physician, however, is not morally or legally obliged to institute new therapies against his better clinical judgment in keeping with accepted standards of care. The physician may not subject a patient to a particular therapy, even if the family may demand it, if it is against his professional judgment. Conflicts may be resolved through improved communications, seeking second opinions, and psychologist's consultation, seeking the help of other senior physicians of the hospital or the hospital's Ethics Committee, if in existence.
- The discussions should be between the family and treating team. The presence of a nurse and a junior doctor will ensure consistency in subsequent discussions
- There should be multiple conferencing of adequate duration. Family must be given adequate time and opportunity to ask questions and to express their views and emotions so that they do not feel “rushed” into a decision. This should also be done in a manner that ensures privacy, in a waiting room or similar area
- The family members may express feelings of guilt or remorse that should be resolved with patience. It might be useful to remind the family that death is inevitable and medical science cannot offer cure in all situations; that during the dying process the patient needs a humanistic approach rather than a purely technical one. In case the family has difficulties in accepting the possibility of death, counseling by a professional psychologist may be considered
- The family should receive assurances that due care will be taken to alleviate patient's pain and distress
- Pending consensus decisions or in the event of conflict with the family/patient the physician must continue all existing life supporting interventions.
6.6 Guideline 6Transparency and accountability through accurate documentation
The case notes should clearly reflect, through faithful recording, the entire or gist of all the discussions with the family, the decision-making process and the final decision based on medical appropriateness and patient's/family's preferences.
Documentation implies transparency, clarity, and evidence of an evolving decision-making process that indicates appropriate care on the part of the physician. It would also ensure that the patient is informed of all the available options and that overall care plan has been explained to him. It would provide security for the patient in case of malafide intentions on the part of caregivers or his own family. This would also be helpful to the physician to demonstrate his bonafide intentions in the event of litigation.
- Details of the communications between the medical team and the family should be documented accurately and completely
- Documentation should include details of the discussion and the final decision. The specific modalities withheld or withdrawn should be documented and the comfort strategies planned
- Though signature of a family representative is not mandatory, it is preferable to have a life support limitation form duly filled and signed by two or more members of the family and treating team.
6.7 Guideline 7Ensure consistency among caregivers
If a shift is made in the goals of care from cure to comfort, all members of the treating team should be aware of the plan for cessation of a disease specific therapy. The focus should be on keeping the patient pain-free and comfortable while limiting life-prolonging interventions.
It is important that all caregivers are aware of EOLC plan has been made for the patient. This will avoid any unnecessary therapeutic interventions and make the team focus on comfort measure and family support and have consistency in communication with the family.
- The primary physician should address all the members of the team about the discussion; modality of EOLC planned for the patient and shared decision made with the family
- Clear documentation of the plan will help in communicating with other members of the team who are not present during this discussion
- The bedside nurse can play an important role in ensuring that there is consistency among all caregivers in following the care plan.
6.8 Guideline 8Implementing the process of withholding or withdrawing life support
Once a shared decision has been made with the family and documented withholding or withdrawing of life support should be initiated. Before proceeding with EOL measures, it is important to prepare the staff, the family members, the patient if capable and the patient's environment. The common modalities involve not initiating new therapies aimed at cure, withholding, weaning/withdrawing from mechanical ventilation, vasopressors, renal replacement therapy, therapeutic medications, nutrition, and extubation.
To give a patient with life limiting illness a right to a life free from pain, and distress and avoid the agony and burden of a prolonged dying process through life support interventions.
Whatever approach is used, appropriate use of pharmacologic therapy, depending on prevailing levels of analgesia and sedation at the time of EOLC decisions, should be individualized and used to ensure that the patient is pain-free and comfortable at all times.
- Prepare the patient's room - Patient may be kept in a special room or even taken home to die if feasible and palliative care support is available. Comfort of the patient and family is paramount (e.g., Noise levels, lighting, and temperature). Remove unnecessary equipment and bring additional chairs into the room, if required
- Prepare the patient
- Position the patient comfortably
- Stop unnecessary monitoring (e.g., Oximetry), unnecessary devices (e.g., feeding tubes), unnecessary tests (e.g., blood investigations), and discontinue medications that do not provide comfort and provide those that do
- Ensure that the patient is calm and distress-free before while withholding or withdrawing support.
- Family - Make visiting restrictions liberal (e.g., number of visitors, timing, and duration). Honor requests for cultural and religious rituals. Caregivers could mitigate the stress of the family by discussing what is likely to happen during the dying process.
6.9 Guideline 9Effective and compassionate palliative care to patient and appropriate support to the family
Provision of compassionate care at EOL is not mere control of physical symptoms, but involves respecting patient choices on preferred place of care and managing nonphysical issues such as psychological, emotional, spiritual, and existential distress.
Provision of EOLC is strongly founded on certain guiding principles such as (A) Good control of pain and physical symptoms. (B) Preferred place of care should be respected. (C) Preferred place of care should be safe and secure with few crises. (D) Care givers should feel involved, supported, empowered and satisfied. (E) Health care providers feel comfortable, confident and foster a sense of teamwork. It is important for the family to be prepared, educated, and feel supported about EOLC provision and health care providers to be accepting and anticipating that patient is dying and willing to provide EOLC.[15,66]
Scope of palliative care in EOLC involves:
- Relief of EOL symptoms such as pain, dyspnea, delirium, and respiratory secretions
- Review of existing care protocols (medical/nursing)
- Review of medication chart and stopping unnecessary medication
- Stopping routine and unnecessary investigations that may not contribute to the process of care
- Continued communication throughout the process
- Counseling regarding optimal hydration and food intake
- Psychosocial support to patient, family, and caregivers
- Meeting special family requests (religious/spiritual/cultural).
Principles of EOLC Symptom management and physical care [Table 9].[68,69]
EOLC symptom management
6.10 Guideline 10After death care [Table 10]
After death careCulturally appropriate and sensitive after death care should be provided to all the dying patients irrespective of the situation or the setting.
After death care begins with communicating the news of the death to the family and caregivers, early and in a sensitive manner. The news should be communicated in a calm and private environment. It is essential to take inputs from the family regarding after death rituals. Verification and certification of the death should be done at the earliest and every effort should be directed at smooth and dignified exit of the patient from the hospital.
6.11 Guideline 11Bereavement care support [Table 11]
Bereavement supportEnd-of-life care does not culminate at death but continues even after death. Bereavement care helps family/care giver to cope with grief and other issues.
Bereavement support to the family should begin before patient's death. Families and caregivers who are at high risk for bereavement are identified and are prepared for patient's death. In bereavement phase care givers with bereavement symptomatology are promptly identified and managed with the help of medical social workers, clinical psychologists, and psychiatrists.
6.12 Guideline 12Review of care process [Table 12]
Review of care processReview of care process is an important quality assurance activity, which aims to review and reflect the care provided and in turn improve the process of care.
Quality of EOLC provided should be reviewed on a case-by-case basis by the multidisciplinary team that provided the care and the series should be audited periodically with the help of external auditors. Review will help to bridge gaps in care process, understand the family's perception of the care provided, and satisfaction of the healthcare providers such that there is a continued improvement of the EOLC process.
Go to:7.0 Conclusion
Setting goals appropriate to clinical situations of poor prognosis are an integral part of patient care. At the EOL, the goal of treatment should shift from cure to comfort. The Joint Policy of the ISCCM and the IAPC provides the basis on which doctors can practice good medicine, and provide optimal care to their patients when death is imminent. This document contains the major practice points for EOLC. Individual practitioners must adapt these to the appropriate sociocultural context for their patients and areas of practice. The ambiguous legal position on withholding and withdrawing life-sustaining treatments at the EOL should not deter physicians from providing the best and ethical care to their patients. Honest, transparent, and compassionate communication and meticulous documentation together with effective palliative care aiming at ensuring a good death for the patient are well-grounded in the cardinal principles of medical ethics. A consensus regarding the practices relating to end-of-life care in India should eventually lead to the evolution of appropriate legislation in keeping with the changing needs of medical practice.
Go to:8.0 Future Directions
This policy recognizes that EOLC in India is poorly developed. The ISCCM and IAPC, through this document, have signaled a determination to improve the quality of EOLC in this country. This will require significant churning not only in the practice and thinking of medical practitioners, but also in the society and all those that represent its various sections.
The only way to bring about an awakening in the society is through education, advocacy, and debate. The ISCCM and IAPC must act as catalysts in this process, through providing leadership and direction. They must engage with opinion leaders, politicians, press, lay public, jurists, and patient groups, to encourage a rational, healthy debate based on science and ethics. The term euthanasia must be clearly separated from withholding and withdrawal of life support at the EOL. It is only when lawmakers respond to societal needs will an enabling law be enacted. Even today, misunderstanding of the terminology and fear of misuse stand in the way of a law facilitating EOLC.
The concepts of medical futility, recognition of the dying patient, palliative care, and providing a good death must form an integral part of the curriculum in undergraduate and postgraduate medical courses. Every doctor should be aware of EOLC practices, not just palliative care and critical care experts. The IAPC and ISCCM and other like-minded organizations and experts must develop educational modules and disseminate them widely to practicing physicians throughout the country.
In order to help doctors practice EOLC better, the following educational material could be developed for use across the country:
- Algorithms for EOL decision-making
- Algorithms for management of EOL symptoms
- Framework for application of standard principles of ethics in EOLC
- Framework for surrogate decision-making in EOLC
- Framework for documentation of EOLC
- Standard formats for documenting FLST.
Research in India in this expanding field of healthcare has been negligible. Empirical data on EOL and palliative care need to be generated for India. The unique barriers to EOLC in its sociocultural and political context should be better understood through research. Measures to overcome these barriers should be defined through appropriate interventional studies. Quality of EOLC should be assessed by audit through predefined parameters. The vast cultural and ethnic diversity of the country provide a unique opportunity for research on factors influencing EOL and palliative care practices.