End-of-Life Choice, Palliative Care and Counseling

Posts Taggedhealth care

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.

A Health Care Declaration of Independence

The freedom to make one’s own health care decisions is an essential liberty. Individuals deserve health care that’s based on their needs rather than what profit demands.

Over at the Health Care Blog, you can read a fantastic Health Care Declaration of Independence. Penned by Donald W. Kemper, the “Declaration” is modeled after the U.S.’ own Declaration of Independence:

When in the course of human events, it becomes necessary for individuals to dissolve their professional bands of medical dependency and to assume among their obligations the primary responsibility for their own health to which the Laws of Nature and of Nature’s God entitle them, a decent respect to the opinions of humankind require that they should declare the causes which impel them to seek Health Independence.

We hold these truths to be self-evident, that all people are created equal, that they are endowed by their Creator with certain inalienable Rights, that among these are the freedom to direct ones own Life, to provide for ones own Health and to die with dignity—that to assist in providing such rights when otherwise unattainable, health professions are instituted among people, deriving their roles solely from the consent of the people they serve—

That whenever any system of health services becomes destructive of these ends either through excessive costs or by preempting from the people their own inherent responsibility for Health, it is the right of such people to alter their relationships to that system and to institute a new role for themselves, laying its foundation on such principles and organizing its relationships in such form, as to them shall seem most likely to maintain their health, safety, and financial well-being. Prudence, indeed will indicate that long established and sacred physician-patient relationships should not be abolished for light and transient causes. But when the increasing fragmentation and depersonalization of health services threatens to render people into a state of absolute dependency upon the system, it is their right, it is their duty, to throw off such dependency and to establish new relationships to insure their role in Health.

Such transgressions have been the sufferance of many health care consumers; and such is now the necessity which constrains them to alter their own health care behavior. We have allowed the present health care system to grossly neglect the innate capacity of millions of responsible Americans to assume productive roles in the maintenance of their own Health. To prove this let facts be presented to a candid world.

The designers of the American health system have failed to recognize the individual and the family as the dominant component in the treatment of most common health problems.

They have not adequately provided information and education to those afflicted with specific health problems, nor have they encouraged patients to seek out such information.

They have discriminately disenfranchised the afflicted of their rights to privacy, personal dignity, and human status.

They have provided pecuniary incentives for the unwarranted institutionalization of the afflicted.

They have created an unwarranted and hazardous degree of reliance on chemicals to alter normal body conditions, thus unwillingly encouraging many forms of drug abuse.

They have failed to assure continuity of care among professionals and have inhibited the individual from assuring such continuity for himself.

They have fostered crisis intervention in health problems by neglecting emphasis on prevention and early detection of disease.

They have stripped from the people much of that basic health responsibility necessary to motivate change in their own eating, smoking, and exercise behavior.
In every stage of these neglects the basic resources for their dissolution have been present in the people themselves. A health system, which has continually ignored these neglects and resources, is unfit to provide health services.

We therefore, the citizens of the United States of America, appealing to the Supreme Judge of the world for the rectitude of our intentions, do solemnly publish and declare that the primary and ultimate responsibility for our health lies solely within each free person, that it is not bound by dependency to the health professions and that the health care system must now be altered to allow that responsibility to be fulfilled.

And for the support of this declaration, with a firm reliance on the protection of divine Providence, we initially pledge to each other, our sacred honor, our dignity, and our health.