End-of-life Care Events

The recent publicity about the last days of Terry Schiavo and Pope John Paul II has raised end-of-life care to the visibility level of the evening news. It is likely that there are very few families in San Diego County who haven’t exchanged at least a few words about the issues.

Unfortunately, there was a lot of misinformation that was promulgated during the media coverage of these events. Particularly in regard to the care of Terry Schiavo, the term ‘hospice’ was used frequently in conjunction with her care, but nothing more was said. Consequently, some people took away the impression that hospice programs starve people to death. Several of our employees had nasty notes on the windshields of their cars or were accosted in the street with epithets.

Now is the time for physicians to play their education role and to capitalize on the visibility of the issue in order to advocate for better care of their patients. From our point of view, here are some of the important things to ask your patients.

1) Find out what they know about dying. Ask if they have any questions about the recent news stories. Ask an open-ended question like, “Many of my patients had questions about death and dying after recent events. I wonder if that is true for you?”

2) Ask them to describe the values on which they make medical decisions and on which they want you and others to make decisions when they can’t make them. Not every medical decision can be foreseen. It helps those who make decisions to have some guiding principles that are more helpful than ‘nothing heroic’ or ‘let me go’ or ‘do everything.’ In the case of Terry Schiavo, there was a conflict in values. Her husband said she wanted ‘quality of life’ and ‘wouldn’t want her life prolonged.’ Her parents valued life of any quality. Unfortunately, there wasn’t more information. If there had been a note in the medical record about the results of this kind of conversation with her doctor, events would have been quite different. The other ways in which your patients can let their values be known are:

• Have a discussion around the dining room table. Allow family to ask the ‘what if’ questions and get specific answers.
• Write a letter to your family and give a copy to the doctor for the medical record, describing patient values and how the patient wants decisions to be made about curative or life-sustaining treatments if the patient is mentally incapable of making a decision.
• Complete a living will, which provides direction in the event the doctor thinks the patient has a terminal illness. Recognize the limited utility of a living will because it 1) needs to be available, and 2) needs to be determined you are terminally ill — a category generally without an agreed-upon definition.
• Legally establish someone to speak for the patient if he or she can’t speak by appointing a durable power of attorney for health affairs. While California law permits family and friends to make decisions in the event the patient can’t, it provides no guidance about which person. Most patients know their family and friends — they know who is reliable and who is not. What they don’t know is that the loudest and most accessible person may predominate. If such a person is not the person the patient wants making decisions, the best way is through the durable power of attorney for health affairs. This durable power of attorney is guided by the patient’s values and wishes when advising physicians about what the patient would have wanted.

3) Answer their questions about normal dying. It is normal for people who are dying to stop eating and drinking. The available scientific evidence shows that normal dying is not uncomfortable. If they are dying with a painful condition, pain can be controlled without hastening death. Scientific studies have shown there is no correlation with opioid dose and time of death for patients cared for in hospice programs. Providing artificial feeding or hydration neither prolongs life nor helps people feel more comfortable when they are dying. In fact, it can make them feel worse. Language like ‘starve to death’ or ‘dehydrate to death’ is used to imply neglect or malice. Patients who are dying of some underlying disease are dying with or without artificial hydration or nutrition. People who die if nature just takes its course are not ‘murdered’ because artificial support is removed. Such decisions are based upon the patient’s values, which is why defining those values is so important.

4) Ask them to describe how they’d like their death to be. Many people will describe physical comfort, a peaceful environment, not being a burden to family or friends, and wanting their business to be ‘finished.’ Hospice care is a way to help families accomplish these goals.

5) Ask them how they want to receive information, including prognosis, when the time comes. It is much easier to ask this early in a therapeutic relationship long before there is ‘bad’ news to be given. Including this as part of questions about immunization status or screening tests makes it routine. If they say, “Tell me the truth,” you can remind them of that later when you have important news. If they say, “Don’t tell me,” then ask with whom you should speak. Patients can give away their right to know — just make a note in the chart.

6) Find out what they know about hospice care by asking a question like, “Tell me what the word hospice means to you.” Many people will say ‘a place you go to die’ or ‘a program when there isn’t anything else the doctor can do.’ Correct their misperceptions by saying:

‘Like for Pope John Paul II, hospice programs help patients stay at home by bringing the healthcare to them and coaching family and friends to participate. Also, like for Pope John Paul, things like feeding tubes may be used to help the person feel better. If they don’t work, they are stopped, just like for Pope John Paul II.’

About 10–15 percent of all patients who enroll in hospice programs ‘graduate’ by being too well to continue to be eligible. Such people can re-enroll later if it seems best.

Hospice care is appropriate when the primary goals are for comfort and quality of life. That can be for many months. Things like antibiotics, IVs or other treatments are permitted when they help to achieve the patient’s overall goals.

The mission of palliative care and, especially, hospice care is the prevention and relief of suffering. While physicians focus on the basic physical causes of suffering, like pain, nausea and dyspnea, other issues may be “painful” for a patient. Fear of abandonment, worry about family issues and conflicts, loss of dignity and self-esteem, and existential questions about meaning and value are all sources of suffering that benefit from an interdisciplinary, team approach to care. The time it takes to address these issues, the experience, and the systems that make it possible exceed the capacities of standard healthcare. The best system for providing interdisciplinary care to patients living with advanced illnesses is hospice care.