Questions and Answers for End-of-Life Decision-Making

These questions were compiled by ElderCare Online from member requests and other sources. Dr. John Carter provided these written responses. Dr. Carter is the Co-Director of the Greenberg Center on Ethics, Jewish Home and Hospital, New York, NY and an attending physician at the Hertzberg Palliative Care Institute, Mt. Sinai Medical Center, New York, NY (as well as assistant professor in both the Departments of Geriatrics and Medicine at Mt. Sinai Medical Center in New York.

Q: How can one be sure that she is providing a good "quality of life" when her
elderly loved one can not communicate (due to brain injury, dementia or stroke)?

A: This is an excellent, and commonly asked, question. When a loved one cannot be
understood clearly , we (family, healthcare workers, etc.) need to be diligent in
anticipating objective signs of discomfort, such as grimacing, moaning, unusual restlessness, etc. It's not easy, but I believe it is better to err on the side
of alleviating any suspected physical discomfort. Of course, having easy access
to a primary doctor and/or nurse who is sensitive to these issues is a must.

Even more difficult is addressing possible emotional suffering. There is no easy set of answers, but knowing that loving family members and/or friends are willing to be present is a great comfort in itself.


Q: What is this thing called "quality of life" anyway?

A: Quality of life is an individual's personal beliefs and reflections on what
factors of daily life constitute a fulfilling and meaningful existence. That is,
quality of life probably means something different to each one of us. For example, one person may believe a life dependent on machines, such as a respirator, is still worth living, and another person may feel he/she would not want life artificially prolonged in such a manner. It is also important to remember that a person may change his/her mind about their own definition of quality of life, often based on new experiences/etc.


Q: My mother has advanced Pick's Disease and is increasingly unable to eat liquid foods. She has already had pneumonia that the doctors think was caused by food and fluids getting caught in her lungs. Should we put her on a feeding tube?

A: A difficult decision, of course....what is most important to keep in mind is what you (and other loved ones) believe your dear mother would want under these circumstances. It appears that your mother's condition is likely irreversible, and many of us in geriatrics medicine believe that a person with permanent swallowing problems (such as from Pick's or Alzheimer's) will continue to
aspirate (or dribble down airway/lungs) her oral/throat secretions despite receiving feedings via a tube. So, the only real benefit to a feeding tube is POSSIBLE prolongation of life by maintaining adequate water/food. It will be important to consider if your mother would think a life with a feeding tube is acceptable....family members, friends, religious leaders, doctor/nurse may all have their own perception of what they think your mother would want. In palliative care and regular medical care, we often see people in similar
circumstances NOT receive feeding tubes and have peaceful lives in their remaining days/months.


Q: With so many religious traditions, how can secular institutions such as governments and most health care organizations help families to make end-of-life decisions? Are there basic ethical frameworks for making decisions about end-of-life care that do not conflict with religious beliefs?

A: Health care providers may themselves be educated in medical ethics (or bioethics) and specific state law concerning advance directives. In addition, a stellar heathcare provider (an individual or institution) will hopefully be interested and energetic about conselling patients and families about reasonable expectations concerning an ill person's prognosis as well as implications of
interventions such as artificial hydration/nutrition/etc, plus explore a history of the ill person's wishes/perceptions of life/etc.

Collaboration with religious authorities, such as a patient's pastor and/or healthcare chaplain, is often used in working with patients and families. An ill person's personal views (including religious) are always paramount.


Q: My family has never sat around the kitchen table to discuss dad's terminal cancer. And I know my brother wants to keep him alive as long as possible due to his guilt of living so far away and never visiting. How can we avoid
conflicts in end-of-life care?

A: As difficult as it certainly is to accommodate each family member's emotional needs (which is quite important), we must always keep in mind the ill person's wishes (either clearly stated wishes, or if we cannot elicit these due to the ill person's grave condition or if the ill person wishes not to discuss it, what we think he/she would want). Often, a loved one demands full, life-prolonging treatment plans without calmly considering what the ill person would want. It is best if a doctor or nurse or other healthcare worker is able to sit down with everyone to discuss these issues, including what is reasonable to expect with each treatment option.

Q: What are the most common ethical dilemmas that caregivers to elderly loved ones face (stroke patient, Alzheimer's Disease, COPD and CHF)?

A: In my experience, decisions near the end of life are the most fraught with difficulties. Treatment decisions most commonly encountered include: whether a frail older person should remain at home despite very little supervision and/or resources; whether someone would want the use of feeding tubes and/or IVs to have his/her life prolonged (and under what circumstances?....such as, to be kept alive but be unable to take care of oneself, etc); would a person want to continue to be hospitalized, have medical procedures done such as repeated blood tests, be put on a respirator, have CPR, etc. Again, it often is not easy to tease out all these issues, but the main theme is as follows: we should always attempt to explain issues to the frail, ill person directly, and if he/she cannot understand, these decisions should be based on what a loved one understands is the ill person's view on life and its value.


Q: My mother told my sister that she plans to commit suicide by overdosing on her medication rather than die a painful or drawn-out death. My mother is clear-headed and has always been positive and active, but she has recently received a diagnosis of inoperable pancreatic cancer. How can we talk her out of this and encourage her to fight the disease when it is clear that she has given this a great deal of thought?

A: Many gravely ill people become desperate and consider suicide because they fear suffering (both physical and emotional). When an ill person feels abandoned by the healthcare system or is worried about under-treated pain, shortness of breath, etc, he/she may become quite desperate. What your mother may most benefit from is a strong connection with a doctor/nurse/etc who will assure her she will receive excellent palliative care throughout her illness. In addition, depression even in terminally ill people may be a factor which often can be lessened by supportive therapy and/or medication (closely supervised and prescribed).

Q: What are the particular challenges that spousal caregivers face (e.g., an elderly wife caring for her husband with dementia) when making decisions about end-of-life care? Where do spousal caregivers get support for these types of decisions when there are few family members available?

A: Challenges include: when/if you consider accessing extra help at home or placement in a nursing home when care at home threatens to exhaust the caregiver; the use of potentially life-prolonging therapies when someone becomes gravely ill (such as feeding tubes, respirators, or even whether to have someone go to a hospital at all), and very crucially, when to realize when the caregiver her/himself is no longer able (physically, emotionally and/or mentally) to take the best care of an ill, frail older person.

Where to get this support is dependent on the local community....the best approach may be to contact one's own doctor or hospital for advice, or consider contacting an advocacy group (such as Alzheimer's Association, the local Department for the Aging, Foundation for Senior Citizens, etc). I believe, however, that local community supports ,if at all available, may best help a caregiver access appropriate support services, including counseling about "case
management" issues.


Q: Should families consider hospice care for a loved one with advanced Alzheimer's Disease? In what cases would hospice or palliative care NOT be advisable?

A: Hospice care is very appropriate for many suffering from advanced Alzheimer's Disease. Indeed, it IS a terminal illness (even though many people carry the diagnosis for many years). When someone is so ill that he/she uses very few words, starts to refuse food/fluids, is close to being chair or bed-ridden, etc, this may be the right time to speak w/ one's doctor or nurse about the appropriateness of hospice. Palliative care is always appropriate for anyone with a chronic illness...one does not need to be within a year of death to benefit from the principles of palliative care, such as excellent pain (and other symptom) relief, attention to supporting the spirit, etc. Hospice is used primarily as care for those who are clearly in the last months of their lives (although prognosis is usually very difficult for even the best of physicians... the best clinical judgement is used, but each ill person will have his/her own course of illness).


Q: Our father was always an active and dynamic man - he was president of a large company. But now he is immobilized by a stroke and only my mother seems to be able to communicate with him. How long can this go on? And when should we consider withholding life support measures? He would never want to be this way!

A: People who suffer from the ravages of strokes often have unpredictable prognoses. What puts a person at greater risk of terminal illness is the risk of future strokes, other medical illnesses, the individual's ability to continue to eat/drink well, etc. Speaking to a doctor or nurse who actually knows the details of your father's health is advisable.

On the issue of life-prolonging measures: what should determine decisions about life prolongation are your father's wishes (either his clearly stated decisions, either written or a history of verbal statements about his feelings; or his proxy or surrogate referencing what he/she surmises your father would want based on an interpretation of his philosophy on life, etc). If your father does not already have a health care proxy or durable power of attorney statement, it is certainly worth attempting to find out who, amongst your family, your father would wish to be his spokesperson if he is not able to make healthcare decisions for himself. A verbal response/recognized gesture is certainly consent enough to verify that your father picks one (and hopefully an alternate) health care proxy (2 witnesses can attest to his designation, as long as neither witness is a designated proxy). If your father has no heath care proxy and is unable to designate one now, it is still important to consider having the family gather together to discuss what you think your father would want or not want under certain circumstances. I hope your family can access an excellent healthcare provider to help with these discussions (plus make his/her own notes, so that if/when your father became critically ill, all the right people are aware of what your father values). If your father, under these sad circumstances, would not want his life prolonged using artificial means, this should be honored. Many people can have comfortable last days when their doctors/nurses/etc practice good palliative care.

Tina, welcome to ECO, and thank you for bringing this thread to the front line. I am making a wild guess that the mortuary meant Social Security rather than Social Services. Hospice does not do that. Usually it would be the executor of the estate to notify the government,financial institutions, and insurance companies of the death (often a death certificate needs to accompany the notification, you can usually get any number you require from the funeral home).

There is a lot hospice does to make the last days and the final moment as easy as possible on the family, but they cannot make statements on your LO's behalf to Social Security. After the passing, the executor will need to step in for legal and financial matters. I wish it were easier, but I think perhaps this is a part of moving on, so maybe it shouldn't be easier.

Again, Welcome to ECO.

Casey, excellent stuff - thanks for posting this!

Tina, I"m not sure I understand what it is you're wondering if Hospice should handle. My condolences on your mil.

My Mother inlaw passed and morturary picked her up and I need to know what I do next. Morturary said I needed to contact Soc. Svcs. Shouldn't Hospice be handling it since she was in an assisted living facility?

From the American College of Physicians site, here are some very helpful suggestions on How to Help During the Final Weeks of Life.

From HospiceNet, here is an excellent discussion of Preparing for Approaching Death.

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Puffin