End-of-Life Choice, Palliative Care and Counseling

Conscience Regulations

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.

Idaho Governor Asks Legislature to Revisit Bill that Imperils Living Wills

S 1353 Becomes Law without Governor’s Signature.

Governor Butch Otter, in a letter to the Idaho Senate March 29th, encouraged the Legislature to revisit a bill that will authorize health care workers to ignore the wishes of dying patients to satisfy their own consciences. Calling the bill’s impact on patients’ rights and end-of-life decisions “problematic,” the Governor allowed the bill to become law without his signature. He urged the legislature and stakeholders to work on finding a balance if the law cannot “protect the rights of providers without reducing patient care.”

Compassion & Choices (C&C), the nation’s largest and oldest nonprofit organization working to improve care and expand choice at the end of life, today hailed the Governor’s concern for honoring decisions within living wills and powers of attorney concerning end of life treatment. C&C however expressed disappointment the Governor allowed the legislation to become law. S 1353 could potentially affect end-of-life care by removing the patient’s own decision-making and putting the decision in the hands of any “health care professional” who may or may not, according to their religious or moral beliefs, follow certain end-of-life directives prescribed by the patient.

“It is appalling that patients suffering from cancer or other terminal diseases would have their medical choices restricted based on a health care worker’s individual moral, ethical or religious beliefs,” said Barbara Coombs Lee, president of Compassion & Choices. “This is an attempt to put the religious views of health care providers above the interests of the patient. ”

“The bill would protect doctors, nurses and other healthcare workers who refuse to treat the pain and suffering of a dying patient, if they believe that suffering has redemptive value,” Coombs Lee said. “If a professional’s faith dictates individuals should face death while conscious, they could refuse to provide sedating medication, hide behind the law, and leave their patients to die in agony.”

The Governor’s letter reads, in part:

“[N]egatively impacting patients’ rights – especially when it comes to end of life decisions is equally problematic. While I am comforted that S 1353 provides for emergency care in life threatening situations regardless of a provider’s moral objection until another healthcare provider is found, we know this will be a small percentage of cases. Greater care must be taken to ensure decisions within living wills and powers of attorney concerning end of life treatment are honored without additional burdens on the patient or family. “I encourage the Legislature to revisit these issues and the definition of healthcare service to ensure patients receive the care they may need with dignity and respect, and without imposing on the morals of a provider.

“I am willing to follow my conscience, allowing it to become law and seeing if it will protect the rights of providers without reducing patient care. If it does not, the Legislature and stakeholders should work on finding a balance.”

Coombs Lee praised the AARP in Idaho for its strong opposition to this bill. “Older Idahoans resent this intrusion into their personal affairs,” Coombs Lee said. “People who have carefully considered their end-of-life choices and prepared an advance directive do not want to have their wishes hijacked in their last days. I am not surprised that so many of the AARP’s 180,000 Idaho members have expressed their concerns to the legislature and the Governor.”

According to a statement from Jim Wordelman, State Director for AARP in Idaho, “AARP members across Idaho are outraged by this bill and its implications on their living wills, advance directives and end-of-life care. This bill will leave patients struggling, unsure of what care they’ll get when it comes to their end-of-life issues. A deathbed is the wrong place to learn what violates someone else’s conscience and what doesn’t.”

Compassion & Choices Director of Legal Affairs Kathryn Tucker, an Idaho resident, said the regulation would harm patients facing the end of life. “The vague language of this bill would mean that any end-of-life service could be denied and ignored, regardless of the patient’s wishes. The bill is extremely broad in that it reaches ‘any person licensed, certified or registered by the state of Idaho to deliver health care,’” Tucker added. “Patients at the end of life, having carefully considered the care they want shouldn’t have their wishes obstructed by those responsible for their care.

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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.

Bishops vs. Patients Rights

I have written how recent changes to Ethical and Religious Directive (ERD) Number 58 compel Catholic hospitals and nursing homes to either disregard your end-of-life choices or violate the letter of the Directive.

The powerful Catholic Health Association says Compassion & Choices and I are exaggerating; the change is insignificant.

To bolster its claim of “no change” CHA points to another Directive, Number 59, that the free and informed judgment of patients should always be respected. What CHA fails to note is the condition at the end of that sentence, “unless contrary to Catholic moral teaching.”

But, one might ask, what exactly does that mean? How broad is that caveat? Who decides – doctor, bioethicist, Bishop? What sort of request, expressed in a living will, may not be honored in a Catholic hospital or nursing home, even before the recent change in ERD 58?

Picture this situation:

My mom received an Alzheimer’s diagnosis when she was just 59, and we both had a pretty good idea what lay ahead. Not far from my home northwest of Chicago is a fine long-term care facility with a wing dedicated to patients with Alzheimer’s.

My mom has been there ten years. She has been well cared for, getting the day-to-day support I couldn’t give on my own. Even as I have watched and grieved her drifting away, I am grateful for the time we have had together over those ten years.

Then she lost her appetite and her ability to feed herself. It’s hard for her even to swallow. Two days ago her care coordinator asked me about a feeding tube. I knew what Mom would choose. My family was supportive. I told the care coordinator Mom wouldn’t want a feeding tube in this condition and I took another little step down that slow path of grief.

But the care coordinator wants me to meet with their chaplain before making a decision. She says my mom is not actively dying and there’s no indication that she wouldn’t tolerate a feeding tube. Will I have to find another facility and arrange a transfer to honor what I know would be my mother’s wishes?

The recent change to the ERD sets out some narrow exceptions when artificial nutrition and hydration (ANH) is not obligatory: if a patient is actively dying; if the tube causes serious side effects like infection; if the patient’s body cannot assimilate the food and water.

But, “My loved one doesn’t want to eat and can’t swallow. I don’t want to force them to stay alive.”— will that justify an exception?
Here’s another scenario:

The phone rings. It’s the assisted living facility’s care supervisor; my father collapsed just after dinner. “The EMTs are taking him to Mercy Hospital.” An hour later I am driving down Baltimore Pike into southwest Philadelphia.

I find my father in the ICU. Hooked up to all the tubes and equipment he looks so much older than a week ago. Over the next day and a half of tests and waiting – learning it’s a stroke – he doesn’t wake or stir. I’m sitting with him mid-morning when the neurologist arrives. He goes over results and treatments they’ve tried. “It’s unlikely that your father will regain consciousness, and if he did, very unlikely that he would return to normal mental function. We need to think about next steps.”

My father designated me his health care proxy for a moment like this. His advance directive is clear, and he’s been blunt in conversation. “Look, I’m eighty-three years old, and I’ve had all the breaks. If something happens, I don’t want to sit in a chair and drool for years.”

I make an appointment to see the social worker in her office, where we’re joined by a priest. I tell them we’re ready to remove life support. She turns to the priest. He says, “Mercy Hospital is committed to honoring advance directives for health care decisions as long as they do not contradict Catholic principles,” The priest has a copy of my father’s advance directive and reads from it. “If I am ever consistently and permanently unable to communicate, swallow food and water safely, care for myself and recognize my family and other people, and it is very unlikely that my condition will substantially improve, I would want to die rather than have life-sustaining treatments.”

The priest looks up. “Your father’s living will suggests that in his unconscious state his life is no longer worth living. Under these conditions, removing life support would be an act of euthanasia by omission.”

Catholic bioethical thought has evolved over centuries. The ERDs that govern care in Catholic hospitals and nursing homes are extremely nuanced. Your directions about life support may or may not be honored in a Catholic institution. Your concern about the burdens of medical interventions might justify forgoing life-sustaining medical treatment. But a wish to be allowed to die under certain circumstances might not.

Have you talked with your family about end-of-life options? Good.

Is an advance directive in place? Excellent!

Will that directive be honored in a Catholic health care facility? We cannot know for sure.