Good Medical Care for the Elderly and How to Get It

Do not resuscitate orders | A family's dilemma

The Boston Globe today (December 3, 2007) explores the complicated subject to DNR orders -- do not resuscitate orders. When are they appropriate? What if the elderly patient waits too long? What decisions must be made and how can they be made?

The problem is, says the Globe's writer Patricia Wen, many families aren't sure about how to discuss this difficult subject. Often they wait too long, and by the time it's obvious that this decision needs to be made, the elderly loved one is not mentally competent to execute the required documents.

My book Taking Charge: Good Medical Care for the Elderly and How to Get It, discusses end-of-life decisions, the Five Wishes (called by the Miami Herald "the Living Will with a Heart"), and how and when to have this difficult conversation with your elderly loved one.

The Boston Globe article, by Patricia Wen may be read here:

For many, 'Do Not Resuscitate' too painful to discuss
Relatives, doctors often delay in offering patients the option

Advance planning is essential for seniors

Get It All on Paper: Without Vital Documents, Aging and Incapacity Put Families in a Terrible Bind, published in the Washington Post on Sunday, March 25, 2007 outlines the safeguards that families can put in place so that their financial and health care decisions are made as appropriate.

It's important to ensure that seniors have a durable power of attorney so that a stroke or a decrease in mental competency due to Alzheimer's disease or other conditions do not prevent a spouse or adult children from making necessary financial decisions that will allow a senior to qualify for Medicaid or to sell a home, when needed, as a senior moves to assisted living, etc.

Health care advance directives are also necessary documents to ensure that a spouse or other responsible adult may make health care decisions consistent with the express written wishes of a senior who becomes unable to participate in making those decisions.

You may read what AARP and the American Bar Association recommend as essential necessary advance planning in the Washington Post article.

Patient characterisitics and end-of-life decisions

While access to hospice and palliative care in America has become far more available, recent studies show that minorities do not often choose this as an end-of-life care strategy, preferring to seek extraordinary measures even when it is obvious that death is not only inevitable but near. The Washington Post reported on March 11, 2007 on studies showing that only 7.5 percent of hospice patients are black, and only 4.8 percent are Hispanic -- less than half their representation in the general population.

An ongoing Harvard project funded by the National Cancer Institute is the largest study to examine the question. Participants in this study are about 800 terminally ill cancer patients in Massachusetts, Texas, Connecticut, New Hampshire and New York. The Harvard group is finding that African Americans are two to three times as likely as whites to want everything possible done to keep them alive, to get life-prolonging care and to die in intensive care.

Dying? Experimental Medications Not an Option

The U.S. Court of Appeals for the District of Columbia on March 1 will reconsider a case dealing with the FDA's regulatory authority covering pharmaceuticals to permit expanded use of experimental medications. The case against the FDA before the Court was filed in 2003 by the Abigail Alliance for Better Access to Developmental Drugs and the Washington Legal Foundation. The litigants seek to obtain access to experimental medications for terminally ill cancer patients. The court is asked to order the FDA to provide a special initial approval of experimental medications that appear effective and to allow their sale and distribution to terminally ill patients who have no other approved treatment options.

The FDA opposes the relief requested, stating that programs currently exist to provide experimental medications to terminally ill patients and that increased access to such treatments would lead to unacceptable risk. In May 2006, a three-judge panel of the court ruled that terminally ill patients have a "right of self-preservation" and should have access to experimental medications that have not reached Phase II clinical trials. According to the 2-1 decision, which reversed the dismissal of the lawsuit by a lower court, "barring a terminally ill patient from the use of a potentially lifesaving treatment impinges on this right of self-preservation." FDA appealed the decision and asked the full court to rehear the case. In November 2006, the court vacated the decision and agreed to rehear the case

Hospice Care and Dignity at End of Life

Only once have I participated in a hospice experience. Friends and neighbors gave hospice care to Sharon's mother at the end of her life. At first, I was reluctant to intrude. I called and offered meals on Mondays, Wednesdays and Fridays. I delivered the meals to Sharon and John's kitchen at 6 PM, with hand-written instructions about what was needed as a finishing touch. Sometimes, I'd also bring flowers cut from my garden.

Finally, one day, I arrived as Sharon and her "Healing Harp" group were playing for her mom -- surrounding her bed with the lilt of Celtic music. I was invited to move to Sharon's mom's bedside. Later, I was asked to give Sharon brief respite so that she could take a walk. I learned to give drops of "liquid gold," to soothe, and to giving comforting touch to a lady who was in a coma.

I've always believed -- well, since I ever first thought about this -- that even though people are comatose, they can doubtless hear everything said at their bedside. They can feel comforting touch.

Sharon's mom died about 6 weeks after she arrived to lie dying in Sharon and John's living room. At the memorial service, filled with loving memories of her mother and filled with joyful recollections, Sharon said: "And then John and I debated. Shall we tell Jeanne that Mom has died? Or can we keep this a secret a little while longer. Her meals are so good!"

Sharon and John's invitation to me to share their hospice experience moved me to choose hospice for my mom. Unfortunately, Mom died the night before she was to arrive in my home.

I was inspired by an article that I read recently in the New York Times describing a Hospice that I've not experienced -- a Hospice movement in which coaches actually prepare everybody for that last breath, tell you what to expect, give you permission to fully participate in the dying experience and not to perceive it as a sorrowful or frightening moment. This must be what is known as "A Good Death."

Here's a link to an article on Hospice written by Jane Gross, and published in the New York Times on May 20, 2006. "For the Families of the Dying: Coaching as the Hours Wane."

It inspired me. I highly recommend it to you.

End-of-life Care and the Futility-Care Policy

In an article published in January 2006, the Washington Post described a refusal on religious grounds by some health care workers to provide RU 486 or similar treatments. A colleague, Mike Mestelle, responded to my post on the State Bar of Michigan's Elder Law Listserv about failure to provide treatment to the elderly based upon a doctor's decision that further treatment would be futile, stating:

"Frankly, while I see your point, my interest is really in the opposite direction and can best be summarized, I think, by restating one of the paragraphs near the end of the article. 'Advocates for end-of-life care are alarmed that the laws would allow health care workers and institutions to disregard terminally ill patients' decisions to refuse resuscitation, feeding tubes and other invasive measures.' "

I do not disagree at all with Mr. Mestelle's statement. However, there are two diverse medical/ethical issues at stake.

On the one hand, a person's patient advocate should have the right to insist that the patient's wishes, as expressed in his or her patient advocate designation should be honored, even though to perform/not perform the requested medical procedure might hasten the patient's death. This would include such decisions as the withholding or withdrawal of ventilators, the withholding or withdrawing of artificial nutrition and/or hydration at the end of life.

However, there is a far more subjective decision-making process that doctors and hospitals may engage in that may frustrate the express wishes of the patient as expressed in his or her patient advocate designation: the decision to withhold treatment, despite the express wishes of the patient to be treated and the request of the patient advocate for treatment based upon that designation. This process has been called the "Futility Care" policy or, in Great Britain, the "passive euthanasia" policy.