End-of-Life Choice, Palliative Care and Counseling


Atul Gawande: How to Talk End-of-Life Care with a Dying Patient

Compassion & Choices has long been a leader in the effort to empower patients to make their own end-of-life decisions.  Five states now have expanded end-of-life choice, including New York and California.

In July, Dr. Atul Gawande published a much talked about article on aggressive medical interventions for dying patients–and how patients and doctors must work together to decide priorities for how and when to treat illnesses for those facing the end of life.

In October, Dr. Gawande discussed the four important points for doctors to discuss with terminally ill patients about their end-of-life care. Instead of pressing patients to make hard decisions, Gawande emphasizes the importance of asking questions about their hopes and fears.

Obama Pushes Hospitals To Honor Patients’ Choices

By Scott Hensley

By ordering hospitals that take Medicare or Medicaid money to allow patients to be visited and helped by whomever they want, President Obama was taking a shot at those that have resisted the wishes often recorded in advance directives.

The presidential memo specifically notes the challenges for gay and lesbian people whose partners have sometimes been unable to act as legal surrogates.

Many hospitals already have broadened the categories of people permitted to visit or aid a hospitalized person. And some states, including North Carolina, have patient bills of rights that give the hospitalized person the power to say who’s OK to visit.

But there’s also been some backsliding on advance directives, too. Barbara Coombs Lee, president of Compassion & Choices, a patient advocacy group, talked with NPR’s Julie Rovner about problems in some states, such as Idaho, where conscience provisions allow health workers who disagree with a patients’ treatment choices to ignore them (see bottom of page)

Similarly, late last year the U.S. Conference of Catholic Bishops made the use of feeding tubes for patients nearing the end of their lives more likely, even when people had specified beforehand that they didn’t want them.

Dr. Jason Schneider, former president of the Gay and Lesbian Medical Association, told NPR’s Ari Shapiro that unless a hospital has a formal policy allowing same-sex visitations, gay couples can run into trouble. Same goes when it comes to who can be a surrogate decision maker for an incapacitated person.

The president’s order will take time to implement in federal regulations. But advocates hailed the decision. Some say the New York Times’ reporting on the case of a same-sex couple in Florida helped push things along. Despite having power of attorney, a woman was unable to see her partner before she died of an aneurysm in 2007.

Listen to a short excerpt of Compassion & Choices President Barbara Coombs Lee with NPR’s Julie Rovner.

It’s National Healthcare Decisions Day – do you know if your decisions will be honored?

Compassion & Choices, the nation’s largest and oldest nonprofit organization working to improve care and expand choice at the end of life, today marked National Healthcare Decisions Day, releasing new language every American may consider to strengthen their advance directive. The new addendum, My Directive Regarding Healthcare Institutions Refusing to Honor my Healthcare Choices, is designed to protect patients in the event that they are an inpatient in an institution that will not honor their advance directive due to religious, moral or ethics policies. Individuals might find themselves in such an institution due to an unplanned emergency or because circumstances provide them no other choice.

The addendum addresses potential problems arising from the United States Council of Catholic Bishops’ instructions to Catholic providers to disregard healthcare choices that conflict with Catholic moral teaching. Most recently, the Bishops instructed 624 Roman Catholic-affiliated hospitals, 499 nursing homes and 48 Catholic Health Maintenance Organizations that artificial feeding of permanently unconscious patients is almost always morally obligatory, regardless of advance directive instructions or family wishes.
Adding the language in this addendum:

  • clarifies admission to a religiously-affiliated facility does not imply consent to particular care mandated by the institution’s religious policies, and
  • directs a transfer if the facility declines to follow the wishes outlined in an advance directive.

This addendum is available now on the end-of-life planning page of Compassion & Choices’ website: http://www.compassionandchoices.org/g2g

The right to make health care decisions is hollow unless those decisions actually determine the care received. National Healthcare Decisions Day is intended “to encourage patients to express their wishes regarding healthcare, and providers and facilities to respect those wishes, whatever they may be.” It is troubling to think that over 20% of America’s health care providers operate under ethical and religious policies that may prevent them from honoring the wishes expressed in advance directives. I suggest that people making an advance directive consider including this addendum, because you just cannot know whether a religiously-affiliated institution will carry out specific end-of-life choices.

The addendum, developed in consultation with experts in hospice and palliative care and elderlaw attorneys, is as follows:

My Directive Regarding Healthcare Institutions Refusing to Honor my Healthcare Choices

I understand that circumstances beyond my control may cause me to be admitted to a healthcare institution whose policy is to decline to follow Advance Directive instructions that conflict with certain religious or moral teaching.

If I am an inpatient in such a religious-affiliated healthcare institution when this Advance Directive comes into effect, I direct that my consent to admission shall not constitute implied consent to procedures or courses of treatment mandated by ethical, religious or other policies of the institution, if those procedures or courses of treatment conflict with this Advance Directive.

Furthermore, I direct that if the healthcare institution in which I am a patient declines to follow my wishes as set out in this Advance Directive, I am to be transferred in a timely manner to a hospital, nursing home, or other institution which will agree to honor the instructions set forth in this Advance Directive.

I hereby incorporate this provision into my durable power of attorney for health care, living will, and any other previously executed advance directive for health care decisions.

On National Healthcare Decisions Day I encourage Americans – of all ages – to talk with their doctor and loved ones and document their wishes in an advance directive. People may also want to strengthen their advance directive by addressing the unknown question of whether a religiously-affiliated institution will honor those wishes.

For more information about end-of-life planning, visit Compassion & Choices Good to Go resource page: http://www.compassionandchoices.org/g2g.

Rep. Blumenauer to Keith Olbermann: I should have called them life panels.

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An all-too-common tragedy and a small triumph.

Two prominent newsmen bared their souls – and their stories of a loved one near death from a devastating illness. British broadcaster Ray Gosling divulged a hospital visit years ago. Responding to the intolerable pain of his lover, near death, Gosling said he “picked up the pillow and smothered him until he was dead.” Wednesday, MSNBC’s Keith Olbermann shared the story of the crisis that led his father to ask Keith for any relief, even death. Olbermann had the presence of mind to approach a physician, and request the sedative that relieved his father’s pain and panic.

I have no desire to contrast the acts of these two men. Their stories touch us deeply, but we stand in no position to second-guess their actions in a desperate situation. But we have much to learn from their stories because there is every chance that each one of us will find ourselves in a similar room, pleading for relief, or standing by the bedside searching for the best response.

Gosling told his story briefly as the camera followed his walk through a graveyard. His partner was suffering from AIDS. “In a hospital one hot afternoon, the doctor said ‘There’s nothing we can do,’ and he was in terrible, terrible pain.”

Western medicine is a remarkable profession and I practiced as a physician assistant for over twenty years. Its culture rests on diagnosis and treatment. When people’s bodies go wrong, we find the cause and fix it. But the third, indispensable thread in the culture is caring, and relief of suffering. When their inability to find a cure frustrates physicians and they forget to care, their patients and those close to their patients feel abandoned, which can be harder to bear than death itself.

Too many terminally ill patients suffer with under-treated pain. Too many feel abandoned because their physicians forget about their duty to relieve suffering and conflate “incurable illness” with “hopeless situation.” And too many loved ones resort to extreme, violent and desperate acts when support is lacking and legal options seem inadequate. Instead of counting on a family member to pick up a pillow, patients should be able to talk with their doctors about a range of legal, safe, peaceful options for easing a painful dying process. Suffering, from the patient’s perspective, should be as much the doctor’s concern as machines and lab results.

Olbermann spoke at length about the long fight his father waged against a series of infections and complications. “Pneumonia, three or four times — I’ve lost count. Kidney failure, liver failure . . .” Five nights before his broadcast, Olbermann found his father thrashing in his bed, repeatedly mouthing, “Help,” “Stop this” and eventually, “Kill me.”

When I went to see the Surgical Intensive Care Unit resident I told him my Dad had hit his wall. That he couldn’t take any other work, that it was now terrifying torture, that he needed it to stop. But I said, look, I’m his health proxy, we’ve had conversations about end-of-life care — we’ve had them in here, we’ve had them when he was home and well, I’m not operating in the dark here. I said I think he really wants the one word he keeps mouthing: He wants help. Is there any medical reason not to give him some sedation, a little mental vacation from being a patient?

The sedation worked. Olbermann reports his father remains comfortable and breathing well, but has not awakened.

He’s not being sedated anymore; he only has the strength to fight off the infections, or wake up — not both. We’re hoping he does the first, then the latter. We’re prepared for the probability that he will do neither. His team and I had another “life panel” discussion not six hours ago. And thank God I had those conversations with my father.

At this writing we still hope for his recovery. If he does not, we wish his family peace, and a measure of consolation in the small triumph, that when Dad was speechless yet crying for help, they were able to ease his pain.

Too many suffer needlessly. Too many endure unrelenting pain. Too many turn to violent means. We can, we must, do better.

UPDATE: Theodore C. Olbermann, died, in  New York, on March 13, 2010. Keith Olbermann has a loving tribute to his father on his Major League Baseball blog.