Editor’s note: This column is part of the CDT’s Active Life special section.
More than a quarter of Medicare payments go toward services rendered in the last year of life. Many patients regard this as burdensome, but ineffective planning allows it to happen.
A recent American Medical Association article found that the United States has the lowest proportion of hospital deaths and the lowest proportion of hospital days in the last six months of life among developed countries, although Germany, Belgium, the Netherlands and England — with higher days — had lower per capital hospital expenditures. The United States performs poorly in other areas, especially when related to high-technology interventions. More than 40 percent of patients who die from cancer are admitted to the intensive care unit in the last six months of life, more than twice any other developed country included in the AMA study. Other developed nations spend less than the United States on health care, a finding some attribute to lower intensity care at the end of life.
Nevertheless, these figures are encouraging. According to the article, “in the early 1980s, more than 70 percent of U.S. cancer patients died in the hospital. Over the past 30 years, recognition of preferences for home-based end-of-life care and patients rights to refuse medical interventions and economic pressures to lower end of life costs and expand hospice use have all played an important role in advancing end of life care. Yet excessive utilization of high-intensity care near the end of life, particularly in the United States relative to other developed countries, underscores the need for continued progress to improve end-of-life care practices.”
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Speaking recently at a seminar held by attorneys Fleming & Curti in Tucson, Ariz., Harriet Warsaw, executive director of The Conversation Project, an organization that seeks to spur families to talk about end-of- life wishes, provided the message that “it is not enough to sign your living will, health care power of attorney and related documents — you need to let people know what you actually want.”
These questions boil down to the four Ws:
▪ Who should speak for you when you can’t?
▪ What should they be saying?
▪ When do you want these issues raised?
▪ Where do you want to spend your final time — at home or in a hospital?
Essentially, you need to let folks know how you want to live your life at its end.
One has a constitutional right to refuse medical treatment under almost any circumstances as well as to say in advance what should happen if you can no longer speak for yourself. The Pennsylvania legislature contemplates three situations — a terminal condition (essentially an incurable medical condition in an advanced state caused by injury, disease or physical illness that will result in death, despite the introduction or continuation of medical treatment); a state of permanent unconsciousness (essentially a total and irreversible loss of consciousness and capacity for interaction with the environment); and severe and irreversible brain damage or brain disease with no realistic hope of significant recovery. Although these appear to be precise definitions, in nearly every life situation there are gray areas, and the legislature cannot forestall expressing other wishes.
No one should impose their values for life decisions on others. Each person is unique and has his or her own answers to the four Ws above, but a lack of discussion with family can lead to needless, expensive and unwanted care. No one wants to let a relative go, even when there’s no hope. In family arguments, often the person advocating additional treatment often wins. If the relative expresses their Ws, the family knows.
The Conversation Project has created an information kit to help individuals talk about their wishes. The brochure (and there are several versions) starts by guiding in issues to be addressed. Then it helps set up a plan for the discussion; finally it helps summarize the conversation. We have also adapted a handbook created by the American Bar Association and the National Academy of Elder Law Attorneys to be used to help in thinking about this and making sure you and your health care agent understand each other. These may both be downloaded at goodall.org/resources.
Amos Goodall is certified as an elder law attorney by the National Elder Law Foundation. He has an LL.M. in elder law (with distinction) from Stetson College of Law, and he practices in State College.