End-of-Life Choice, Palliative Care and Counseling

Posts Taggedadvance care planning

My Mother, Pat Manning

My mother, Pat Manning, lived a charmed life.

When she was 16, she became the first-ever Queen of the Cody, Wyoming, Stampede Rodeo. That’s her on the right in front.

She sat in the owner’s box when Secretariat won the Kentucky Derby, met more than one president of the United States and traveled the world. She even walked away from a single-engine plane crash. Mom loved her family, antiques, and the joy and laughter of the many guests she entertained at home.

But when she was 79, she began to dwindle. No “big” diagnosis; an infection here, another illness there. Many trips to the hospital often led to days in intensive care. For three years, she kept returning home, where my sisters and brother and I were able to care for her and keep her relatively comfortable. But she was tired and often in pain. And her strong mind mourned how weak her body had become.

She was very clear with us: She did not want to live that way. As she put it, she was sick and tired of being sick and tired.

At 82, she made her final trip to the hospital. The doctors explained the situation to my sisters and brother and me: They said there was the possibility of surgery with a slim chance of benefit and a lot of drawbacks. The four of us siblings had spent a lifetime disagreeing. At any given time we could differ about anything, including the color of the sky. But my mother had told us what she wanted so clearly that we were able to speak about this in one voice to support her decision because we knew she didn’t want to live this way. There was no hand-wringing, no second-guessing.

She died very peacefully four days later surrounded by family. Her room was filled with friends until hours before her death.

I am still grateful today for the gift my mother gave me. She told us exactly what she wanted, and in return we were able make sure she died peacefully.

I didn’t realize how important — and rare — that gift really was until two years later when I came to work for Compassion & Choices. I am deeply grateful to be here, to help others give their children the same gift and to help their children return the gift by honoring their parents’ end-of-life wishes.

On Mother’s Day, I encourage you to think about the kind of gift you can give a loved one. Tell them clearly how you would want to be treated in a variety of situations, what you would prioritize if you were living with physical pain, disability, terminal illness, dementia or debilitating chronic illness. Choose a healthcare proxy and make sure they understand and support your priorities. You’ll need that person not only if you can’t speak for yourself, but to support your decisions in a crisis.

And urge the mothers in your life to answer these questions as well. Ask who they would want to make choices if they no longer could.

Here’s another photo, of Pat and Jack Manning with their first great grandchild.

This Sunday I will be thinking of my mother, everything she did for us, and particularly of her clarity in telling us how she wanted to finish her life. In honor of my mother, for Mother’s Day, I’ve made a gift to Compassion & Choices. If you’d like to do the same, click here.

To her memory, and to every mother reading this, I send my best wishes for a very happy Mother’s Day. Thank you so much for all you have given.

– Jane Sanders

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.

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.

The Death Panel Boogeyman

December 28, 2010
Stephen J. Dunn

In 25 years of law practice I have done estate planning for hundreds of people. Every one of them has wanted a health care durable power of attorney. Such a document enables the client (“patient”) to name someone (“patient advocate”) to make medical decisions for the patient in the event the patient is unable to make them for himself. Those decisions include the decision to terminate or forgo medical care if, in the opinion of the patient’s attending physician, either of these conditions exists: (1) the patient is in a persistent vegetative state without hope of recovery; or (2) the patient is terminally ill and expected to die within six months, and medical treatment would only serve to artificially delay the patient’s death. A health care durable power of attorney also expresses the patient’s wish not to receive medical treatment if either condition persists.

Most health care durable powers of attorney name one or two back-up patient advocates in the event the prior-named patient advocate is unable to act. A health care durable power of attorney becomes part of the patient’s medical record.

A health care durable power of attorney empowers a patient to remain in control of his or her medical care and avoid the indignity and suffering that might otherwise obtain. When my mother was in her final illness, she shared a hospital room with a woman who had been lying in a vegetative state for years. The woman laid in bed all day long with an agape expression on her face. Unable to swallow, she was fed through a tube inserted into her stomach. One can certainly question the wisdom and compassion of such treatment. Taxpayers paying for it is beyond misguided.

A health care bill proposed by House Democrats in 2009 included a provision for Medicare reimbursement to doctors for end-of-life counseling, including the availability of a health care durable power of attorney. Such a provision evinces sound policy. Many seniors cannot afford to have an attorney counsel them about a health care durable power of attorney.

Nonetheless, House Minority Leader John Boehner, R-Ohio, whose judgment I normally revere, seized on the provision and urged that it would “start us down a treacherous path toward government-encouraged euthanasia.” Former Governor of Alaska Sarah Palin raised the spectre of “Obama’s death panels.” Such fearmongering lacks any basis in fact. No one is advocating euthanasia or “death panels.” The health care law enacted in March, 2010 omitted the end-of-life counseling provision.

Reimbursement for end-of-life counseling has recently returned, in the form of a Medicare regulation to take effect January 1, 2011. Once again we are hearing the term “death panels” recklessly cast about in the media. Hopefully such groundless sensationalism will not derail a regulation so clearly in the public interest.