End-of-Life Choice, Palliative Care and Counseling

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Easy New Format for Advance Directive

Arrives for National Healthcare Decisions Day on April 16th

Compassion & Choices, the nation’s oldest and largest nonprofit organization working to improve care and expand choice at the end of life, today announced a new resource to aid all Americans in advance care planning. In time for the fifth annual National Healthcare Decisions Day (NHDD), Compassion & Choices is offering free advance directive forms specific to every state, in an editable PDF format. The new format eases the completion of an advance directive, and Compassion & Choices offers additional tools to facilitate the process.

“We can’t control everything about our death. But if we communicate effectively, we make it more likely that our wishes for the end of life will be known and respected,” said Barbara Coombs Lee, president of Compassion & Choices. “Recent studies indicate the single most powerful thing a person can do to improve the chance for gentle dying is — simply and courageously — to talk about it.”

Compassion & Choices offers a Good-to-Go Toolkit and Good-To-Go Resource Guide to help define priorities, understand who to talk with and find ideas on how to get the conversation rolling. These planning tools and editable state-specific advance directive forms can be downloaded at CompassionAndChoices.org/G2G, free of charge.

Over a thousand organizations joined this year to promote NHDD, an initiative to encourage the majority of Americans who have not yet done so to complete advance directives.

For more information please visit www.compassionandchoices.org

Compassion & Choices is a nonprofit organization working to improve care and expand choice at the end of life. We support, educate and advocate.

Yearning for Freedom and Control

Jane Brody wrote about advance care planning in yesterday’s New York Times and directed people to Compassion & Choices for our free Good to Go Guide. Our phones have never been busier. Everyone here has dropped their usual duties to answer calls and send materials to people all over the country. In just a few hours we counted 600 requests by telephone. Even greater numbers of people downloaded the documents directly from the website.

What’s the reason for this enormous demand? Once again, we see the simple, overwhelming desire of people everywhere to chart their own course as the end of their lives comes into view. A person’s last days may still be off in the distant horizon, but the yearning for a death that honors the life and the determination to remain a FREE person is palpable when thoughts turn to life’s end. .

Ms. Brody suggested people complete two documents. One is a Living Will to document your wishes. The other designates your Health Care Agent, to carry out your wishes with concrete decisions about procedures or treatments if you become unable to speak for yourself. The documents work in concert and sailing forth with only one means you’re boat is inherently leaky.

A Living Will alone is incomplete. It needs a designated agent: a specific person you charge to negotiate the death you feel fits the values and beliefs of a lifetime. It’s important to name this person, and most important, to talk with this person, preferably with other loved ones present. They will be able to confirm and validate future decisions so the agent doesn’t bear sole weight of responsibility.

A designated Health Care Agent (or Proxy) needs a Living Will as firm, undeniable evidence of your choices. Let’s face it; doctors may apply enormous pressure to accept tests and burdensome treatments with extremely low chance of recovery or substantial improvement. Your Healthcare Agent will need the strength of documentation to say with conviction, “I’m sure my dad would not want that, if there’s no chance he’ll return to a functioning life.”

I don’t think most doctors fully realize how deeply people care that their ideas and their principles, govern their end-of-life decisions. Doctors seem to think what matters most to people is how many days they exist on this planet.

No, doctors. For most people, it is not how long our days measure, but the measure of our days that grips our minds in the quiet moments of dawn. When we awaken early and thankfully greet another day, we nod to our acknowledged mortality and comfort ourselves with one hope — that our deaths will be on our own terms, in full expression of who we are and the life we lived.

Keep Your Voice, Even at the End of Life

by Jane Brody
New York Times
January 17, 2011

The specter of “death panels” was raised yet again this month, prompting the Obama administration to give in to political pressure a second time in its effort to encourage end-of-life planning.

Of course, the goal of this effort was not to make it easier to “pull the plug on grandma” in order to save the government’s money, as some opponents would have it. The regulation in question, which was withdrawn just days after it took effect on Jan. 1, simply listed “advance care planning” as one of the services that could be offered in the “annual wellness visit” for Medicare beneficiaries.

The widespread misconceptions about the regulation were exemplified in a letter to the editor published Dec. 29 in The New York Times. “Death panels,” the writer said, would have denied her 93-year-old mother colon cancer surgery that has given her the chance to live “several more years.”

But that is not at all what the regulation would have done. Instead, “by providing Medicare coverage for end-of-life planning with a physician, it would have encouraged doctors to talk to their patients about their wishes and made it far easier and more likely for these important conversations to take place,” said Barbara Coombs Lee, president of Compassion & Choices, an organization that helps people negotiate end-of-life problems.

With payment schedules that limit doctor visits to a mere 15 minutes or so, it is unreasonable to expect physicians to spend 30 or more unreimbursed minutes discussing with patients the many decisions that can arise at the end of life.

Encouraging such conversations might indeed save money in the long run. Doctors and hospitals are paid only for treating living patients, so there is always a possibility that financial incentives, conscious or unconscious, would prompt many expensive if futile life-extending measures — efforts that many patients would veto if they could.

In a study of patients with advanced cancer published in March 2009 in Archives of Internal Medicine, the costs of care during the last week of life were 55 percent higher among those who did not have end-of-life discussions with their doctors.

At least as important, the quality of life in their final days was much worse than among those who did have such discussions. Countless studies have shown that extensive medical interventions can make the last weeks of life an excruciating experience for patients and those who care about them.

An Individual Decision

Although talk about end-of-life options has often emphasized avoiding unwanted, intrusive and futile care, that does not mean everyone would or should make that choice. Many patients, especially younger ones, might be inclined to ask that every conceivable measure be taken.

Dr. Josh Steinberg, a primary care physician in Johnson City, N.Y., routinely discusses end-of-life desires with very ill patients. He told me about an AIDS patient who was down to 77 pounds and had no strength, no appetite and failing kidneys. But the man refused hospice care, saying he wanted to go home and live as well as possible for as long as possible.

“Though we didn’t think he’d last more than a day or two, we got lucky,” Dr. Steinberg said. “We stumbled on a new treatment, he rallied, and he’s home doing well right now.”

For other patients, hospice care is the right decision. Studies have found that terminally ill patients are likely to live longer, with a better quality of life, when they choose hospice over aggressive treatment to the bitter end.

The point is that end-of-life care is an individual decision that should be thoroughly discussed with one’s family and physicians. Studies have shown that when doctors don’t know a patient’s wishes, they are inclined to use every possible procedure and medication to try to postpone the inevitable. More often than not, this shortens patients’ lives and prolongs bereavement for the survivors.

In an interview on the syndicated news program “Democracy Now!” on Jan. 5, the writer and surgeon Dr. Atul Gawande said that patients with terminal cancer who discuss end-of-life choices with their doctors “are less likely to die in the intensive care unit, more likely to have a better quality of life and less suffering at the end, do not have a shorter length of life, and six months later their family members are markedly less likely to be depressed.”

Plan While You Still Can

For many more of us these days, the end does not come swiftly via a heart attack or fatal accident, but rather after weeks, months or years battling a chronic illness like cancer, congestive heart failure, emphysema or Alzheimer’s disease. When doctors do not know how you’d want to be treated if your heart stopped, or you were unable to breathe or eat and could not speak for yourself, they are likely (some would say obliged) to do everything in their power to try to keep you alive.

A year ago, my husband was given a diagnosis of Stage 4 cancer. As his designated health care proxy, I had agreed long before he became ill to abide by the instructions in his living will. If he was terminally ill and could not speak for himself, he wanted no extraordinary measures taken to try to keep him alive longer than nature intended.

Knowing this helped me and my family avoid agonizing decisions and discord. We were able to say meaningful goodbyes and spare him unnecessary physical and emotional distress in his final weeks of life.

Preparing these advance directives should not wait until someone develops a potentially fatal disease. Patients in the throes of terminal illness may resist discussions suggesting that death may be imminent, and close family members may be reluctant to imply as much.

Indeed, judging from national studies and people I know (including a 90-year-old aunt), most Americans regardless of age seem reluctant to contemplate the certainty that one day their lives will end, let alone discuss how they’d want to be treated when the end is near.

A study published in January 2009 in The Journal of the American Geriatric Society showed that 40 percent of people questioned had not yet thought about advanced-care planning and 90 percent hadn’t documented their wishes for end-of-life care.

Ideally, everybody over 18 should execute a living will and select a health care proxy — someone to represent you in medical matters.

Compassion & Choices has an excellent free guide and “tool kit” to help people prepare advanced directives. They can be downloaded from the organization’s Web site, www.compassionandchoices.org (select the “care” tab, then “planning for the future”) or call (800) 247-7421 for a free hard copy of the documents.

Who Failed the American People?

The federal government once again has decided not to help seniors with advance care planning. On Wednesday, the Obama administration announced it is dropping a Medicare provision reimbursing doctors for talking with their patients about end-of-life planning. People have been calling for the reimbursement policy for years – not only advocates of better care and choice at the end of life, like Compassion & Choices – but hospice workers, geriatricians, palliative care experts, public health in end-of-life planning and politicians of both major parties.

Every respected authority recognizes incentives for doctors to learn their patients’ preferences make it more likely patients will get the care they want. Most important, seniors who are ready to plan seriously for how they hope to spend their final days want this provision. Family members who might otherwise find themselves making unguided decisions for loved ones unable to speak for themselves would also benefit

Why then did the administration drop the provision, just days after it took effect? The explanation was that the process of publishing the regulation was not by the book, but certainly politics played a part. This common-sense measure has been the center of controversy for over a year and a half. The whole spectacle highlights how our political process can fail miserably to promote the public good.

Experts, advocates, seniors and families are understandably disappointed. We may all wonder where to direct our frustration and place responsibility. Should we blame opponents of health insurance reform, who cynically distorted the facts about advance planning conversations to stoke fear? Is the media responsible, for endlessly repeating the sensational claims about “death panels” – even now – long after they are proven false? Should we deplore that politicians’ own efforts to avoid the subject of death and deter conversations about the provision, ironically ignited more controversy and accusations of stealthy tactics? What are we to do when our leaders in government appear to back down to bullies?

I believe it is better to direct our energy toward solutions: solutions that we, individually and collectively, can bring about outside the political process. A change in Medicare policy is still a worthy goal, but we cannot patiently wait for our broken politics to mend. The result would be too many dying in circumstances of unnecessary torture; too many families struggling to make decisions in crisis.

Medicare beneficiaries can still have a conversation with their doctors about advance care planning. In fact every American – or at least those who anticipate that some day they may die – should have this conversation. The point of an advance directive, after all, is to prepare for difficult circumstances that could precede our deaths.

If you become unable to make or communicate health care decisions, having talked with your doctor and your loved ones, appointed a representative and prepared a written record of your wishes will be invaluable. If the process seems daunting, visit our Good to Go page. You can find help and ideas in our Good to Go Resource Guide and get everything you need free in our Good to Go Toolkit.

When the political fails, the personal can still succeed. You can make it happen. Initiate the conversation. Protect your family from a potential struggle over decisions about life-sustaining treatment.

For more information about end-of-life planning, visit Compassion & Choices’ Good to Go page.