Living With Grief:
Ethical Dilemmas at the End of Life
HFA's Year 2005 Initiative
Questions and Answers
The answers to the following questions from the April 2005 Hospice Foundation of America 12th Annual Teleconference, Living with Grief: Ethical Dilemmas at the End of Life, were posed to teleconference panelists during the program by program participants who called into the teleconference phone line.
Unfortunately, time constraints prevented HFA from airing all questions during the live program. We pledge to program viewers/participants that panelists will answer all questions following the program.
Answers to questions were provided by the following panelists: William H. Colby, JD; Charles Corr, PhD, CT; Kenneth J. Doka, PhD; Bruce Jennings; William Lamers MD; and JoAnne Reifsnyder PhD, APRN, BC-PCM
Questions and Answers Regarding:
Questions and Answers Regarding Advance Directives:
Q. When someone does not have anyone to name as a surrogate, what should they do?
A. A surrogate or substitute decision maker (sometimes called a health care proxy) is valuable because that individual can argue forcefully on behalf of the wishes of a person who can no longer take part in the making of decisions and because that individual can address situations and facts that were not or could not have been anticipated by the person who can no longer take part in the making of decisions. It is difficult to imagine a person who is so isolated from all other human beings as to have access to NO other individual who could be named as a surrogate. If not a relative or friend, what about a trusted member of the clergy, a lawyer, a counselor or social worker, a contact through a senior citizen advocacy center, etc.? Some imagination and initiative is called for in the situations that appear to be contemplated in this question.
Q. Does having a person’s wishes on video help or hinder the process?
A. Putting one’s wishes on video is not likely to be harmful if they are articulated clearly and precisely by a competent individual. However, the limits of any statement of wishes (in writing, in an audio or video recording, etc.) are that they may be too general or too specific and thus may not address unanticipated situations or facts. That is why written living wills are thought to be valuable, but—more importantly—it is why most advisors recommend signing a health care durable power of attorney that appoints a surrogate or substitute decision maker (sometimes called a health care proxy) who can take into account unanticipated situations or facts and act on behalf of the wishes of the person who makes such an appointment. Of course, it would be important to share one’s wishes and desires with such a surrogate/proxy in ways that are understood by that individual.
Q. Did Bill Colby say an advance directive would not have helped Terri Schiavo?
A. Of course we can't know whether an advance directive would have solved the dispute among the Schiavo and Schindler families or not. But my guess is that it would not have made a difference -- the families still would have been at odds about her medical condition, appropriate treatment and who should decide. It's often hard for a piece of paper to resolve a family disagreement about the proper care of a loved one who can no longer speak. Now, had Terri Schiavo talked about her values with her family and then completed an advance directive, that might have helped.
Q. Can a patient who is disoriented verbally revoke a health care power of attorney?
A. This is really a legal question that deserves to be answered by a knowledgeable attorney. The nature of the disorientation would be critical: Is it temporary or verbal? How far does it extend? What are its implications? In terms of revoking a health care power of attorney, the key issue is whether the patient is competent to make such a decision.
Q. Is there a danger that living wills may conflict with advance directives? Are advance directives enough?
A. Living wills are a type of advance directive, as are durable powers of attorney in health care matters and other informal statements of a person’s wishes about end-of-life care and health care in general. Thus, living wills should not be contrasted with advance directives as this question seems to do. Now for the substance of what seems to be of concern here: Certainly, there can be conflicts when one makes more than one written or verbal advance directive. To minimize that possibility, it is desirable to strive to ensure that one’s written or verbal advance directives are clear and consistent. One should also discuss one’s wishes about end-of-life care with and express one’s health care preferences to family members, friends, health care providers, and any other relevant individuals. Do this as fully as possible, as far in advance as possible, and as often as possible (that is, on more than one occasion). In addition, make a clear appointment of a health care surrogate/proxy to act on your behalf in situations when you cannot do so yourself and share your wishes and desires with that individual. Finally, make copies of your advance directive(s) and share them with your hospital and all of those noted above.
Q. What is the panel’s opinion of attorneys being able to override patient’s wishes?
A. The reason for putting emphasis on attorneys is not clear in this question. In general, there might be some extreme cases in which it could become undesirable to override a competent patient’s wishes, either as conveyed directly or through a clear and convincing way of expressing those wishes. For those cases, a judicial determination made by a court might be appropriate. In all other cases, one would hope that the wishes of a competent individual expressed in a clear and convincing way would not be subject to being overridden by attorneys or anyone else.
Q. If in medical directives we can ask not to resuscitate, can we request to be assisted in dying?
A. This is really a legal question that deserves to be answered by a knowledgeable attorney.
In general, however, one cannot expect a request for assistance in dying to be honored in any state except Oregon and, even then, only when the request is made in accordance with the specific requirements of the Oregon Death with Dignity Act. Apart from the Oregon situation, the relevant distinction here is that the right to refuse unwanted treatment interventions does not extend to a right to request direct assistance in dying.
Q. Will there ever be a standardized advance directive which can be acknowledged state to state?
A. Perhaps so. For example, the “Five Wishes” document developed by Aging with Dignity in Florida (www.agingwithdignity.org) is currently acknowledged as legally valid in some 35 states. In general, however, matters like this are subject to state legislation under our form of government. As a result, any advance directive must satisfy the requirements of the state in which it is to be implemented.
In addition, The American Hospital Association recently renewed “its commitment to educating patients and the public on patient self-determination or advance directives.” Central to AHA’s educational effort is www.putitinwriting.org, an English/Spanish website that provides consumers, hospitals and other providers with information on living wills and advance directives. The site has downloadable information, instructions and wallet cards. New public service announcements in both languages urge everyone to talk with their families about their end-of-life wishes and to complete advance directives.
Do not wait, however, until a standardized advance directive is developed that is legally valid in all jurisdictions of the United States. Complete your own advance directive(s) now in accordance with the requirements of your local area and share the results as described elsewhere in these comments.
Q. Does the POLST overrule Advance Directives? Is the POLST medallion honored if you don't have a hard copy?
Special thanks to Susan Hickman, PhD, Senior Scholar, Center for Ethics in Health Care, Oregon Health Sciences University, and an expert on this topic, who helped our panelists with this reply. POLST stands for Physician Orders for Life Sustaining Treatment.
A. It depends--typically a POLST and advance directive are complimentary, as a POLST should reflect a patient's treatment preferences in the form of orders. When a POLST and advance directive are in conflict, several factors are considered, including the date of the forms and the circumstances in which these documents were generated. Generally, more recent forms take priority. In an emergency situation with conflicting forms, the default would typically be to err on the side of more aggressive treatment until the issue can be figured out. Since an advance directive requires physician interpretation in order to effect treatment, the situations where this would raise the most questions typically involve a physician and less imminently urgent questions, so there is time to investigate what led to two apparently contradictory documents. The problem is not common in Oregon or in other states using the POLST Paradigm, probably in part because so few people have advance directives.
In response to your second question, there are no medallions or bracelets--typically, the POLST form must be present for it to be honored. Faxed and photocopies are considered legally valid. In Oregon, we do have wallet cards that are abbreviated versions of the POLST form but these are of use in limited circumstances and are not widely used. The wallet cards are not a substitute for a completed POLST but are recognized in some communities with the practice that a full form must always exist.
Additional note from HFA: The POLST Form is a standardized form designed to converst wishes for life-sustaining treatments into medical orders. The POLST program was developed in Oregon (as the answer above implies) but programs based on the POLST paradigm are now used in West Virginia and Washington as well as parts of Wisconsin, Pennsylvania, New York, Utah, New Mexico, Michigan, Georgia and Minnesota.
Q. At what age is it legal to sign a power of attorney or advance directive?
A. This is really a legal question that deserves to be answered by a knowledgeable attorney. In general, one would assume that the person must be competent (under the laws of the state in question) to sign such documents. Legalities aside, however, surely whoever is entitled to make decisions on behalf of a person who is under the legal age of competency might wish to take into account that person’s wishes, insofar as possible.
Q. Do lawyers have enough medical knowledge to draft living wills and advance directives? And is the lawyer’s office the best place to have this conversation?
A. For the first question, whenever one seeks professional assistance of any kind, one should try to obtain that assistance from a professional who has experience and expertise in the subject at hand. Some lawyers, some counselors, and some health care professionals have more experience and expertise on some subjects than others. Many lawyers should have sufficient experience and expertise to draft living wills and other advance directives in accordance with the applicable laws of their state or legal jurisdiction. Still, it is always good to seek out a particular lawyer with the specific experience and expertise that you need.
For the second question, one should have conversations about advance directives, end-of-life care, and health care preferences in general with all relevant individuals, such as family members, friends, health care providers, one’s lawyer, one’s clergyperson, etc. At least for the final preparation of a legal document like an advance directive, the office of a lawyer who is experienced and expert in these matters would be one key place in which to discuss the details of these matters. That apart, there is perhaps no single best place to have a conversation on these matters. Make copies of the resulting document(s), keep them easily available, and share them with your hospital, other health care institutions, and all relevant individuals.
Q. Why aren’t living wills brought up at regular doctor’s visits?
A. Perhaps because they are legal documents for which many doctors may lack specific professional experience and expertise? Perhaps because many doctors feel compelled to limit their contacts with patients in our busy health care system? However, much of that is beside the point. Individuals should assume responsibility for their own health care in these matters and bring up issues related to advance directives on their own. Initiate a discussion about end-of-life care issues and health care preferences in general with your doctor(s), other health care providers, and health care institutions that serve you. State your wishes clearly and directly. Confirm that your doctor(s) and health care providers accept your preferences and are willing to abide by them. If that is not so and is a matter of concern to you, seek out other doctor(s) and health care providers. Individuals should also provide their doctors, other health care providers, and health care institutions that serve them with copies of the advance directives that they have prepared and with information about the health care surrogate/proxy whom they have appointed to act on their behalf if they are not able to participate in decision making.
Q. How many panelists would wish to be tube-fed if they can no longer eat, and why do we bother with advance directives?
A. Speaking only for myself, I would wish to receive tube feedings or any other type of medical interventions if they were a bridge to maintaining or restoring quality in living. I would not wish to do so if those interventions only maintained an unacceptable quality in living or merely prolonged a dying process that was to me intolerable. We “bother” with advance directives because medical interventions that have brought us great benefits have also brought with them new problems. Dying in our time has often become different (more prolonged, more complicated) for many by comparison with how it was in past times, and because we have created social and health care systems in which we are concerned that our wishes will not be heard, accepted, or acted upon. As a result, we engage in conversations about dying (or, at least, we should do so) and in the preparation of advance directives in order to make our wishes known, to have them gain legal force, and to insure (insofar as possible) that they will be implemented. To do anything less—not to “bother” with these matters—is to let impatience and frustration triumph over prudence and sound judgment, and to abandon oneself to whatever life and others may do to us.
Q. If there is no advance directive, who has authority to make decisions if there is a disagreeing family?
A. In general, most states have laws that specify which persons (usually next of kin in a descending order of priority and proximity) have authority to make decisions when an individual is not competent to participate in decision making and when that individual has not filled out an advance directive or appointed a surrogate decision maker. As a practical matter, a “fractured family”—one in which there is serious disagreement about the care that should be offered or pursued—is a difficult situation for everyone involved. One would hope that sensitive care providers could offer, guidance, counseling, and support to the members of such a family leading to reconciliation about decisions that need to be made and a better future after those decisions have been implemented.
Q. With the discussion about advance directives and autonomy, as an RN, why do we still have to get the doctor’s order to agree to honor the advance directive?
A. As a legal and practical matter, it may fall to physicians to make many key decisions about honoring the provisions of advance directives—in the absence of overriding legal or judicial determinations. It would be desirable, however, for all who have useful contributions to make on these matters to be able to offer such input as part of the decision-making process. That is why the hospice philosophy stresses the importance of interdisciplinary teamwork in which professionals, volunteers, patients, and family members can all take part and play a role.
Q. For those vulnerable patients who have no family to be surrogates, is it possible for an organization to refer them to hospice, and/or to help make decisions for them, such as an ethical committee?
A. Yes. Ideally, this should be done when the individuals are competent and can take part in approving such referrals and sources of assistance. In other words, anticipate, anticipate, anticipate, and share, share, share.
Q. Does the panel believe that advance directives are the end all-be all?
A. No, of course not. Advance directives are devices that we have constructed in anticipation of problems that we expect might occur. Advance directives have been developed because medical interventions that have brought us great benefits have also sometimes brought with them new problems, because dying in our time has often become different (more prolonged, more complicated) for many by comparison with how it was in past times, and because we have created social and health care systems in which we are concerned that our wishes will not be heard, accepted, or acted upon. As a result, we engage in conversations about dying (or, at least, we should do so) and in the preparation of advance directives in order to make our wishes known, to have them gain legal force, and to insure (insofar as possible) that they will be implemented. If things changed in our society, then perhaps the actual or perceived need for advance directives would also change. However, the implication of this question seems to disparage the panel’s emphasis on advance directives. If that is so, then perhaps one should consider that if, in our present circumstances, we do not attend to advance directives and the discussions that should accompany them, then we must resign ourselves to allowing impatience, frustration, inattention, and downright laziness to triumph over prudence and sound judgment, and we must be willing to abandon ourselves to whatever life and others may do to us.
Q. If a hospice patient wants to be resuscitated, must he sign a living will that states that he wants to be resuscitated?
A. No. Why not just address that desire with one’s doctors and other health care providers? To express this preference in a more formal way, rather than just filling out and signing a living will, one should also compete and sign a durable power of attorney for health care matters, thereby appointing a health care surrogate or substitute decision maker who can act on the person’s behalf if he or she should become unable to participate in decision making. Note, however, that some extreme situations may develop in which an individual desires resuscitation or any other medical intervention even when health care providers have come to a serious judgment that such interventions are futile, unwarranted, and undesirable. In such extreme situations, with or without the involvement of a court or judicial determination, the interventions may perhaps be terminated even over the desires of the individual in question.
Q. There’s been much discussion on advanced care planning; how do systems cover the costs of educational interventions?
A. This is an economics or administrative question for which I have no real expertise. However, the government can play a helpful role. The Patient Self-Determination Act of 1991 requires institutions that receive federal funding to make patients aware of their rights to complete advance directives on admission to the institution.
Also, there have been recent legislative steps taken in Congress. Recently introduced in the Senate (S.347) and House (H.R. 2058), the Advance Directives Improvement and Education Act of 2005 is a bipartisan bill that would give Medicare beneficiaries a free physician office visit for the purpose of discussing decisions about end-of-life care. The legislation would also take additional steps to educate all Americans about the significance of advance directives, which include a living will stating the individual's preferences for care and a power of attorney for health care.
In addition, the bill will provide funds for the Department of Health and Human Services (HHS) to conduct a public education campaign to raise awareness of individual rights under state law in planning for care near the end of life. HHS also would establish an information clearinghouse where consumers could receive state-specific information and consumer-friendly documents and publications.
Contact your state representatives to show your support for the Advance Directives Improvement and Education Act of 2005. It is a start in the right direction to covering educational interventions in advanced care planning.
Q. Should there be a new area of training in which family calls a meeting with doctors with an attorney present?
A. Well, perhaps. It seems that the basic area of concern here is to improve communications among persons who might be seeking health care or anticipating end-of-life situations, their family members, physicians and other health care providers, lawyers, and perhaps other relevant individuals. We surely would not go wrong by striving to improve such communications, however that might be accomplished.
Q. Can a deemed incompetent person in a moment of lucidity change their durable power of attorney for health care or their advanced directive?
A. This is really a legal question that deserves a response from a competent lawyer. It seems basically to depend on the individual’s competency as a decision maker.
Q. How to we get more people to have medical directives? Specific groups to target?
A. Well, the teleconference was one effort, as was the Patient Self-Determination Act of 1991. This question really suggests the value of a broad educational and advocacy effort in the area of advance directives. Members of the teleconference panel are likely to agree with that. In fact, some efforts of that type have already been and are being undertaken, but more would always be beneficial. As for specific groups to target: anyone who might anticipate a possible end-of-life situation or other decision making issue in the area of health care, and who is competent to complete an advance directive and appoint a health care surrogate. That is nearly every competent adult in our society.
Q. Is there a directory for people with advanced directives at a national level?
A. I’m not aware of one at present. There are some for-profit services that offer to make records of advance directives and then make them available to health care providers as requested.
Q. Do parents have the right to direct the health care of their child at the end of the child’s life?
A. In general, the answer to this question is affirmative. Parents are expected to act on behalf of the best interests of their children in these and many other circumstances. Which actions or directives might best serve those interests might perhaps optimally be decided by parents in consultation with their health care providers and, insofar as is appropriate and feasible, in light of discussions with their children about the wishes of those children.
Surely we are aware, however, that some parents do not always act in the best interests of their children and even that some parents cause harm to their children. So some extreme situations might develop in which health care providers could come to believe that certain end-of-life or other health care decisions made by parents are not in the best interests of a child. If so, and if persuasion does not succeed, a need for legal intervention may develop.
Q. If I have an advance directive made in Oregon, will it be recognized in another state?
A. Any advance directive must satisfy the legal requirements of the state in which it is implemented. So the answer is “yes” if the Oregon advance directive does satisfy the legal requirements of the state in which it is to be implemented, but “no” if it does not. However, if the reference in this question to the state of Oregon is meant to involve a request for assisted suicide in accordance with the Oregon Death with Dignity Act, then the questioner should be aware that Oregon is at present the only state to have such legislation. As such, one could not expect that that specific request would be honored in any other state.
Q: Many patients and families I have worked with feel that their advance directives are final in any medical decision making for their future care. I have seen DNRO refused and fighting amongst family on what is right and wrong concerning patients’ Advance Directives. My question- can an advance directive be contested/denied if any family member or physician is in disagreement or is that advance directive (living will, DPOA, Health care Surrogate/Proxy) binding?
A. All advance directives are intended to be influential in situations in which the authors of those directives are unable to take part in decision making. Advance directives that are developed in accordance with the requirements of the local legal jurisdiction do seek to be binding. However, disagreements and disputes are always possible. Their force, if any, is likely to depend on the individuals involved. That is the human situation. It is also why we have courts to adjudicate legal disagreements and to interpret laws and other documents. Few things are universally and unalterably absolute in the human condition. In practice, anyone who completes an advance directive and who appoints a health care surrogate or proxy to act on his or her behalf should adopt a proactive strategy of attempting to minimize the possibility of misunderstandings or disputes by discussing his or her wishes and their rationale with the surrogate/proxy, with family members, with health care providers, and with all other relevant individuals. As a health care provider, it would appear that there is much room here for you to educate the patients, family members, and other health care professionals with whom you work about these matters.
Questions and Answers to General Questions:
Q. Can you address the fact that 30 to 40 percent of the population doesn’t have access to hospice care?
A. The Hospice Foundation of America is well aware of the fact that many individuals who are appropriate for hospice care are never offered the option or offered referral far too late for it to be helpful. One reason for the teleconference and the Foundation itself is to educate individuals about the hospice option. One of the recommendations of the teleconference this year (2005) was that accrediting agencies sanction hospitals that do not offer timely referrals to hospices.
Q. Was hospice involved in Liam’s [Lawson, www.liamlawsonfoundation.org] case?
A. Yes, hospice was involved in Liam’s case, but only after his grandmother took steps to initiate the care.
Q. How can hospitals make decisions as a system rather than as a collection of individuals?
A. We are not sure what you’re asking here. Certainly the development of sound policies systemizes care. Hospices have found it valuable to have regular team meetings. This allows everyone to contribute and agree to a treatment plan. Many health institutions have ethics committees that try to develop a consistent ethical stance.
Q. What will be the topic of the 2006 Living with Grief Teleconference? I briefly heard it during yesterday's broadcast, but did not get the entire topic.
A. The working title of next year’s conference is Pain at the End of Life: Bridging the Gap Between Knowledge and Practice.
Q. How was Schiavo in hospice for 4 years?
A. Terri Schiavo was in a hospice because hospice clinicians, unlike clinicians who are not trained in end-of-life care, are capable of removing a feeding tube and caring for the patient and his or her family if the patient or legally authorized surrogate asks for the tube to be removed. In this particular case, the primary decision-maker was Mrs. Schiavo’s husband, which is appropriate under our laws and cultural values. As your are aware, Mrs. Schiavo’s feeding tube was removed and reinserted. The first time it was removed was April 2001. At that time, she was expected to live seven to 14 days after the removal of the feeding tube.
Q. Prior to the revolution of technology, starting in the 1970’s, didn’t physicians, nurses, patients, and families deal with these issues of non-initiation and withdrawal of futile or burdensome interventions in a private, ethical, and appropriate way most of the time?
A. Sometimes they did but the options for care were not as extensive then as they are now. In many cases such decisions were more likely to involve an additional surgery or continued chemotherapy or radiation therapy. New technology has blurred the boundary of where life ends.
Q. Considering the dynamic role in hospice care of the Interdisciplinary Team, why wasn't a nutritionist/registered dietician part of the panel? Especially since the panel was addressing the subject of hydration and nutrition at the end of life.
A. A nutritionist would have been a welcome addition to the panel. Unfortunately we often have so many disciplines to represent in a panel that has to be very limited.
Questions and Answers about Physician-Assisted Suicide
Q. Why can’t we look at physician-assisted suicide as empowerment for the patient?
A. PAS can be looked at as empowerment for the patient. It provides the patient with an element of control which is not ordinarily present. It provides an alternative to conventional means of dealing with advanced illness. But PAS must also be considered from other perspectives. In 49 states, it is illegal. It also involves doctors taking part in an action that many doctors do not condone. Patient empowerment is generally a good thing. Great benefit can accrue to patients who develop advance directives that state clearly what they do as well as do not want in the event they are unable to communicate their wishes about care and treatment. At this point in time, advance directives cannot include the alternative of physician assisted suicide.
Q. Positive outcomes of physician-assisted suicide —physicians can provide better pain control—can panel address the conflict between good pain control and legal risks?
A: There is no basic legal conflict between good pain control and legal risks. Most good pain control is not risky from a medical or a legal position. In very rare instances there is a risk the patient might succumb from the dose of medication needed to produce pain control. In my 20 years as a hospice doctor I have never experienced such a situation. The contrary is more likely to occur: lack of pain control is likely to lead to premature death. Poorly managed pain leads to an earlier death; properly managed pain does not kill or lead to death. It often leads to longer survival with improved quality of life.
Q. Given the research in depression treatment, many people have not chosen PAS. Please address.
A. In the days before hospice care and the pain management that can be provided through hospice, it was not unusual to hear of patients who became depressed and fearful and who attempted suicide or asked for someone to help them commit suicide. Now that hospice care is widely available in the United States, such requests are rarely heard. One of the common causes of depression in persons with advanced illness is inadequately managed persistent or recurrent pain. Other causes include fear of pain, fear of deformity, fear of dependency, fear of exhausting funds, fear of being a burden to family, fear of dying, and so forth. The presence of excellent hospice care has helped reduce those fears and enabled dying persons to deal more effectively with their final days. Hospice support for family caregivers makes it possible for most persons to be cared for in their own homes rather than to be transferred to an institution where there is less personal attention.
Q. Please comment on factors involved in ending one’s life re:
- Lack of insurance
- Lack of quality of life in nursing home
- Lack of anyone to help them in sustaining life
A. Please refer to my answer regarding patient empowerment.
Q. If we support legal suicide, how will we handle psychiatric emergencies?
A. There is no problem with legal suicide. Suicide is not illegal. There are no laws to prevent persons taking their own lives nor are there any legal punishments for persons who attempt suicide, whether or not they are successful. The response to psychiatric emergencies (related to suicide?) will probably not be changed no matter what happens.
Q. Question raised during discussion following the teleconference broadcast: In cases of euthanasia and physician assisted suicide, how is health insurance and life insurance affected if a patient makes this decision?
A. Euthanasia is not legal in this country. The Oregon law does not support euthanasia; only physician-assisted suicide. I do not know how the matter of life insurance is handled in the European countries where euthanasia has been legalized.
Regarding insurance policies and the Oregon Death With Dignity Act (ODDA), a provision of the act is that it is NOT suicide, so does not activate any prohibitions regarding life insurance benefits that an individual would otherwise be entitled to. The death certificate indicates that a patient died of their underlying illness and used a prescription under the ODDA.
There may be other issues that would impact the validity of a life insurance policy, however, such as taking out a policy in anticipation of impending death, or two-year minimum for policy to be effective.
Addressing the issue of suicide generally, each life insurance company in the United State has its own policy regarding whether or not benefits can be paid if a policyholder dies by any type of suicide.
Questions and Answers Regarding Artificial Nutrition and Hydration
Q. In the Schiavo case, how did she receive a feeding tube in hospice care?
A. Hospice is a special type of care that is provided to persons with serious, progressive illnesses. Hospice neither seeks to hasten death nor to prolong the dying process. Care is consistent with the patient’s expressed wishes or, when the patient cannot speak for him or herself, a designated proxy’s directions. A patient has the right to refuse any form of medical treatment. To that end, most hospice patients do not want to receive artificially provided feedings as they are approaching the end of life because they consider that type of medical treatment to be too burdensome and/or because they won’t derive any benefit from the treatment. Hospice care is aimed a comfort. A feeding tube to provide fluids, medications or some nourishment could be considered a comfort measure under some circumstances. It is not the feeding tube that should be the central focus, but rather that the goals of care for patients receiving hospice are comfort-focused (as opposed to cure-focused or life-prolonging) and that care should be consistent with those goals.
Q. If we would not starve a dog or lab rat to death, how can there be any legal or moral right to starve Terri Schiavo to death?
A. The right to refuse medical treatment of any kind belongs to the individual. When an individual is no longer able to express his or her wishes concerning medical treatment, health care providers look to the person who was legally appointed by the sick individual to make his/her health care decisions OR when no such legal arrangement has been made, to the closet family member. The question posed to the family member is not what do YOU (the family member) want to do now, but what would your loved one have wanted. Ultimately, Michael Schiavo’s position that his wife would not have wanted to be kept alive by a technological intervention such as a feeding tube was upheld. It wasn’t a question of Michael imposing his morals, but rather a husband speaking for his wife, because she could no longer speak for herself. He was exercising her legal right, for her.
Q. What happens physically when hydration is withdrawn? Does a painless death eventually occur?
How do starvation and dehydration feel at the end of life, compared to a healthy person experiencing dehydration and starvation?
A. Generally speaking, when a disease is progressive and a sick person is approaching the end of life, artificially provided fluids can cause more discomfort than comfort, and while they might prolong life for some patients, might actually hasten death for others by causing fluid overload problems in the lungs and heart that can severely stress the body’s systems. When artificial hydration is withdrawn, the patient will typically become less and less responsive (arousable) and drift into a deep sleep. Dry mouth or cracked lips can be prevented with mouth care. Most hospice patients die without artificial nutrition and hydration, because allowing natural progression to death is their wish. Patients who are alert may wish to have sips of fluid or have their mouths moistened, and hospice staff teach families to provide such supportive care. Patients who are no longer able to eat or drink because of advanced illness do not complain of hunger or thirst. Once they lapse into sleep, they generally die peacefully.
Q. Isn’t artificial nutrition morally distinguishable from life support since artificial hydration does not sustain any body function?
A. Insertion of a tube into a vein to provide intravenous hydration or into the stomach to provide tube feeding are medical procedures. Patients have the right to refuse any and all medical procedures that they consider invasive, burdensome, or undesirable for other reasons. Providing hydration to someone who is dying does not reverse the underlying disease that will result in the patient’s death, but it may prolong life for a few days, weeks or months. As a society, we have agreed that the individual must be allowed to decide whether those additional days are desirable or meaningful to him or her, and further, that it is morally justified for health care providers to withhold or withdraw medical procedures that the patient doesn’t want.
Q. What happens to a patient who has a feeding tube withdrawn? Do they suffer more than the suffering that already exists?
A. No, as described above, the patient generally becomes increasingly sleepy and eventually falls into a deep sleep, passing away peacefully.
Q. How do you know the difference between someone who needs a feeding tube and someone who doesn’t?
A. There is no fool proof objective test for evaluating whether a tube feeding is needed or not, and the issue involves both a clinical question and an ethical one. What a tube feeding CAN do for the patient is a clinical question, one more easily answered. The question of whether a tube feeding OUGHT to be undertaken is an ethical one, and hinges the patient’s own values and beliefs. Health care providers help patients to make decisions about tube feedings by helping them to understand what the tube feeding will achieve, helping to clarify the patient’s goals, and helping to make a treatment decision that is consistent with those goals. For example, a patient with amyotrphic lateral sclerosis (ALS), also known as Lou Gehrig’s disease has a limited life expectancy. As the muscles become weaker, patients with ALS have difficulty holding their heads upright and feeding themselves can become an exhausting chore. Some patients with ALS might choose to have a feeding tube placed at that time, because while they know that the disease will eventually result in their death, they view the feeding tube as a way to improve their quality of life for a period of time. That same patient might decide as he approaches the end of life that he no longer wants to receive artificially provided nutrition and hydration, and prefers supportive measures to keep him comfortable as his disease progresses. In neither instance will the tube feeding reverse the underlying terminal illness. In the earlier stage, the patient’s values and goals might make the tube feeding desirable, or at least tolerable. As the illness progresses, that same patient’s values lead to withdraw of the tube feeding.
Q. Are there any additional studies that artificial nutrition/hydration causes pain? Is it true that continuing food/hydration when a person is near death is painful?
A. When we talk about the experience of pain, we are generally referring to a patient who is able to self-report his or her pain. Pain is a subjective phenomenon, not easily or reliably assessed by someone other than the person who is directly experiencing the symptom. The scientific literature surrounding the use of nutrition and hydration at the end of life is sparse. There are case studies and other anecdotal reports of fluid overload, vomiting, and aspiration associated with these medical treatments in patients whose multi-system failure prevents them being able to circulate and excrete fluids effectively or from digesting and using nutrients effectively. Do we know whether these patients are in pain? We know that it hurts to have intravenous needles placed into veins, because alert patients have told us so. We know that it hurts to have a full belly that is pressing on other organs. We know that it hurts to vomit, and that it hurts to have pneumonia. Most people who are receiving artificial nutrition and hydration at the end of life can’t tell us whether they are having pain because they are too sick – cognitively impaired, comatose or otherwise unable to self-report. But we might infer that pain is associated with these treatments. Recent studies of patients with end stage dementia who were begun on tube feedings demonstrated no survival advantage compared to patients in whom tube feedings were not started. One might reasonably ask why we would want to impose treatment that will not prolong the patient’s life when we also know that the direct effects and side effects are painful.
Q. In the case of Liam, how could the parents have avoided a feeding tube?
A. In cases where children are involved, the decisions to withhold or withdraw medical treatment are emotionally charged, both for family and for health care providers. In the case of Liam, the health care providers and the family might have been in agreement about goals of care (i.e. keep Liam comfortable) but there appeared to be a break down in communication about how to reach these goals. Liam and his family would have benefited form palliative care and hospice intervention sooner. Had they had the counsel and support of health care providers who were experienced and skilled in symptom management, establishing goals of care when cure is not possible, and aligning interventions with goals, the suffering that this family endured could have been avoided.
Q. Would you comment on the late Pope John Paul’s statement on feeding tubes? Pope John Paul stated feeding and hydration is a moral issue, last year. How are we inundated with so much misinformation?
A. Catholic moral theology has always emphasized the sanctity of life. Yet, the Catholic Church have supported the idea that adults can refuse futile medical interventions. It is clear that persons do disagree on whether artificial nutrition and hydration represent medical interventions or basic care.
