End-of-Life Choice, Death with Dignity, Palliative Care and Counseling

Posts TaggedHealth Care Reform

New Study Finds End-of-Life Counseling Improves Quality of Life for Patients

 A new study reported in the current issues of the Journal of the American Medical Association (JAMA) found that patients and their families benefit from having end-of-life counseling. The study showed that offering such care to dying cancer patients improved their mood and quality of life. The patients who got the counseling also lived longer, by more than five months on average. “This study confirms the benefits of end-of-life counseling, as have other studies. It’s shameful that opponents suggest that such counseling is harmful,” said Compassion & Choices President Barbara Coombs Lee.

The new study involved 322 patients in New Hampshire and Vermont who had been diagnosed with terminal cancer. Half were assigned to receive usual care. The other half received usual care plus counseling about managing symptoms, communicating with health care providers and finding hospice care. The study showed that the patients who got the counseling scored higher on quality of life and mood measures than patients who did not.

“Recently, an idea took hold that it’s highly dangerous and tyrannical to encourage
doctors to talk with patients about what kind of treatments they would want if they were
terminally ill and unable to speak for themselves. This notion is false. It’s time to admit
that talking about death won’t kill you, but not talking about it may increase unnecessary
suffering,” said Coombs Lee.



Anti-Choice Extremists Mislead On End-Of-Life Conversation Provision in Health Care Reform

As the health care reform debate heats up in Washington and around the country, opponents of end-of-life choice have launched a misinformation campaign to undermine a key provision of health care reform.

Compassion & Choices has worked tirelessly with supportive members of congress to include in proposed reform legislation a provision requiring Medicare to cover patient consultation with their doctors about end-of-life choice (section 1233 of House Bill 3200).

Anti-choice extremists and their allies in Congress have begun attacking this critical provision, saying it will “promote euthanasia” and that it’s part of a cynical plan to deny health care to the elderly and terminally ill.

Congressman Earl Blumenauer (D-Oregon) sets the record straight today at Huffington Post:

GOP leadership has been gravely distorting the truth and misrepresenting the facts about this bipartisan effort, and in the process throwing members of their own party under the bus — those who have reached across the aisle to do something that will help Americans across the nation.

The bill simply provides people with better care as they grapple with the hardest health care issue of all — their final chapter of life. See the Myths vs. Facts sheet on this. CNN reporter Elizabeth Landau does a great job highlighting the benefits of “doctors and family members having more conversations about end-of-life issues,” which my bill addresses.

This bill has bipartisan support (the main cosponsor is a Republican doctor) as well as support from a diverse coalition like AARP, the American College of Physicians, and Catholic health systems. It is an area where — no matter from a red or blue state — many have been able to bridge the divide.

Over at Media Matters for America, they’ve debunked the misleading talk and laid out the facts in an easy to read format. Read the Media Matters piece here.

Reducing costs does not mean reducing good care

In an attempt to rhetorically beat down efforts at health care reform, the Weekly Standard’s Bill Kristol makes the same “rationing” argument we’ve heard time and again:

But the most important implication of the Kennedy-Shrum claim–“Most of these readmissions are unnecessary, but we don’t reward hospitals and doctors for preventing them. By changing that, we’ll save billions of dollars.”–is this: The government is going to decide–ahead of time, obviously, since deciding after the fact wouldn’t save any money; and based on certain general criteria, since the government isn’t going to review each individual case–what kinds of hospital readmissions for the elderly are “unnecessary” and what kinds aren’t. And it’s going to set up a system “to reward hospitals and doctors for preventing” the unnecessary ones. That is, the government will reward hospitals and doctors for denying care they now provide, care the government will now deem “unnecessary.”

Indeed, this understates the case. For in reality the government isn’t going simply to reward “good” and penalize “bad” admissions. It’s going to prevent insurance companies from paying for “unnecessary” admissions and procedures, if those companies want to participate in the government system. In other words, government bureaucrats are going to deem entire categories of treatment inefficient for all or certain categories of patients, and put those treatments out of bounds for doctors and hospitals.

Kristol seems to suggest that if health care reform reduces medical costs at the end of life, this must be at the expense of good care and necessary treatment. Recent research confirms what we’ve learned from decades of experience improving care and expanding end-of-life choices: More treatments do not mean better care. Futile and painful end-of-life procedures often yield nothing but needless suffering, even as they add great expense. Real reform requires shifting from profit-centered to patient-centered care.

We cannot reform our healthcare system without addressing the fact that it is driven by profits. We must adjust the system when the drive for profit works against excellence. Medicare, as a public system, is the only source of comprehensive data on expenditures. Approximately 5% of Medicare beneficiaries die each year. In 2006, 30% of Medicare expenses were for their end-of-life care. 10% of all Medicare costs occur in the final 30 days of life. Most of the money in those last 30 days pays for intensive care and invasive, unwanted treatments intended to extend life, like feeding tubes and mechanical ventilators.

Ironically, these exorbitantly expensive procedures do not even serve their goal. A large, authoritative study appearing this March concluded:

Analysis demonstrated that higher medical costs in the final week of life were associated with more physical distress in the last week of life and with worse overall quality of death as reported by the caregiver. There was no survival difference associated with higher health care expenditures at the end of life.Few patients get the chance to discuss end-of-life preferences with their doctors. Patients who do have these conversations are much more likely to reject futile, painful procedures and select hospice care. But fee-for-service payment systems – both Medicare and private insurance plans – encourage health care professionals to do as many things to people near death as is medically possible.

Our healthcare system should be driven by what patients need, not what profit demands, a system that pays doctors to talk with patients about peaceful endings when death is imminent and pays for hospice care in the home as readily as it pays for intensive care in the hospital.

True reform will remake this profit-centered industry into a patient-centered one that delivers the comfort care and supportive services people truly want and need at the end of life.

AMA Opposition and the Path Ahead

Working for social change, we run a long race through a wood, dark and deep. The milestones tick by, yet still the path leads ahead into the thicket. We long to break into a clearing and see the finish line ahead.

Over fifteen years ago I enlisted in the fight to secure our right to control the timing and manner of death should end-of-life suffering become unbearable. We have come far in those years. Nearly two-thirds of Americans believe the law should empower terminally-ill, competent patients to choose how they will end their lives.

With the public on our side, we must overcome the resistance of a few powerful opponents. Conservative religious activists oppose us, as they stand in the way of other social change. They hold firm religious beliefs about life’s end and seek to impose them on others through secular law.

But they alone could not stop us if they were not joined by the American Medical Association. The AMA’s outspoken opposition to aid in dying has been cited by the Supreme Court and influences lower courts, state medical societies, and most important, legislatures.

Our society naturally defers to physicians in the matter of prescribing potent medicines. We have invested them as the keepers of, and expect them to manage, those medicines. Yet we chafe at our deference to the medical establishment when they withhold a vitally important choice from some patients.

To ask, “why do our doctors oppose what the majority of Americans support?” misstates the question. The AMA claims to speak for doctors, and the media often echo that assertion, yet barely a quarter of the nation’s physicians are AMA members.

Many medical and public health organizations have policies that support aid in dying, including the American Medical Women’s Association, the American Medical Student Association, the American College of Legal Medicine and the American Public Health Association. The Oregon experience has persuaded medical leaders throughout the nation that legalization of aid in dying improves end-of-life care rather than harms it. The majority of physicians see it as part of their role as reliever of suffering when a cure is not possible. The position of the AMA Council on Ethical and Judicial Affairs however, remains a tired platitude, frozen in time for the last fourteen years: physician aid in dying “is fundamentally incompatible with the physician’s role as healer.”

When pollsters ask individual doctors whether they would support legalized physician aid in dying, their answer is a resounding yes. A number of surveys show nearly two-thirds of doctors are supportive, close to the percentage of Americans in general. Even among those doctors who are members of the AMA, only one out of three opposes legalization. In fact a majority of physicians report they would want aid in dying available to them if they were faced with a terminal illness. Imposing a reverse golden rule, the AMA prevents doctors from helping others to choose what they would want for themselves.

With so many doctors supporting it, who stands against empowering dying patients? Four hundred thirty physicians in the AMA House of Delegates craft its policy. Among those 430 physicians, opposition to end-of-life choice is strong and fierce. Why does the AMA leadership stand in the way of change? We can only speculate on their motive but it helps to ask what benefit the AMA sees in keeping it illegal.

The answer lies in the fact that legalization empowers patients. It empowers them to discuss end-of-life treatment. Legal aid in dying gives qualified patients the power to ask their doctors about their options and to request a prescription for life-ending medication. If their doctor will not honor their choices, legalization gives patients the power to transfer their care to a doctor who will. It breaks the bonds that hold them hostage to the religious beliefs of their doctor. Patients however, do not gain power by taking it from physicians. In my experience, legalizing aid in dying is not a zero sum equation for doctors. It empowers both patients and their physicians to speak frankly, practice medicine safely and face inevitable sadness openly.

Where physician aid in dying remains illegal, the AMA controls both doctors and their patients. Sadly, the AMA has long opposed progress in medical practice and treatment that empowers patients and removes physicians from the absolute center of the decision-making process. The AMA opposed all forms of medical insurance and delayed Medicare enactment for years with its vigorous opposition. It opposed birth control for women and the use of anesthesia during childbirth. Patients fought in court for informed consent, the right that guarantees they must understand treatments and alternatives before agreeing to them.

As with these past struggles, advocates for empowering patients through aid in dying have faced opposition from the AMA and its affiliates that is vigorous and even ruthless. The California legislature debated a Death with Dignity bill in 2007. That bill would be the law today if it were not for the efforts of the California Medical Association, who deployed all their lobbying power in Sacramento to defeat it, twisting the arms of legislators in a raw display of political muscle.

The AMA’s opposition to patient empowerment is frustrating, even infuriating, but predictable. Gloria Steinem has famously said, “Power can be taken, but not given. The process of the taking is empowerment in itself.” At Compassion and Choices we have learned over the years from countless patients facing the end of life, that by embracing that end and making active decisions they forcefully take that power unto themselves. In the same way, as advocates, we cannot expect a small yet potent group of AMA leaders to willingly grant us the change we seek. We must take it ourselves.