As practitioners, it’s easy to assume that the families of residents, as well as cogent relatives themselves, understand the implications of the advanced directives they sign along with other aspects of informed consent. This is an assumption about which we should not assume too much.
The research on medical informed consent is not encouraging. Despite mandated informed consent—for all clinical and research purposes—most studies show patients retain only a limited awareness of medical risks, and they’re not even aware of their ignorance. For example, a study in Dublin, Ireland, “Informed consent: a patients’ perspective,” (Journal of Laryngology & Otology, 2005) surveyed cancer patients about their knowledge of complications after the usual pre-procedure briefing. The results? “More than 80 percent of respondents were happy with the information provided, however, over half of these could not list even one complication of their operation.”
So I am not optimistic about advance directives in practice as opposed to theory.
I am an itinerant psychologist who travels to a variety of nursing homes and assisted living facilities. In my personal life, I was the caregiver to my own frail-elderly parents. So, like many of us, I have experience with aging, dying, and death as both a provider and consumer.
Recently, a new advance directive—”allow a natural death”—has gained some currency alongside the traditional directives, “do not resuscitate,” “full code” and “comfort measures only.”
Advocates for this new directive argue that “do not resuscitate” comes across to patients and families as a withholding of care, while “allow a natural death” implies an acceptance of a natural process.
I am concerned with any words that put a benign edge on grim facts of life and death. No terminology is a good substitute for informed consent.
Legal niceties aside, my anecdotal impression is that in long-term care nobody “dies.” “Passed,” “expired,” “gone” are the usual euphemisms. Nobody simply dies.
There is little demoralization. Many long-term facilities have a party for each month’s birthdays, but I’ve never seen a memorial service for the passed and expired. I was struck by the uniqueness of one facility where it is the practice for a social worker to attend all resident funerals. More typical is another facility where someone had posted a resident’s obituary on the bulletin board behind the nursing station. My act of remembrance was to read it: Mother of four. On the production line at Pratt and Whitney for 25 years. Predeceased by her husband. Wake tomorrow night. Burial Friday. And so she passed into history. On the counter, her chart was being deconstructed, an empty binder sat next to its documents-a thick stack of paper on its way to its own burial in the records room. Next week, the binder was reborn, filling up with documents for a new resident in my world of aging, dying and death. The obituary was gone, too.
So while I appreciate that “allow a natural death” openly speaks the “D” word, I maintain there is no substitute for scrupulous informed consent accompanied by a consultation with staff that allows for discussion and clarification.
An over-reliance on terminology alone could subtlety influence people to make decisions they might decline if they were fully informed of the implications of the options. In reality, it is the intent of “allow natural death” advocates to persuade people to agree to the functional equivalent of “do not resuscitate.” Practically, there is no difference between the two.
I would not want to rely on a clever turn of phrase to be a substitute for due diligence. “Allow natural death” influences patients and their families to reject its opposite, “full code.” And it may often be contrary to how medical decisions are made in the trenches.
In nursing homes, most decisions about resuscitation are not made in the moment of crisis, but well in advance. All the charts I see are festooned with a sticker that says either DNR or Full Code and the life of the person that the chart represents may be months or years away before the directive becomes relevant. The stickers are there as a convenience to the medical staff—so they don’t have to bother about reaching the family when the time comes.
All the more reason for informed consent.
My brother and I—with powers of attorney—signed a “do not resuscitate” order for our father who had severe dementia. But a year later we were suddenly told he had only hours to live unless we sent him to the hospital. We sent him to the hospital. There he hung on for three more weeks, but we drew the line at inserting of a feeding tube. That would have only prolonged his comatose state, and we knew it would be harder to get an order allowing the removal of a feeding tube.
This is the way these decisions often play out. “Do not resuscitate” or “allow a natural death” have their greatest currency when a patient will die without immediate intervention, and the family is unavailable in the crucial minutes of a life-threatening crisis. But when there are choices to be made, they will be made. And life may go on.
Perhaps preferable to simple statements like “full code,” “do not resuscitate” or “allow gentle death” would be a checklist for informed consent about advance directives—something more nuanced than either of the stark endpoint alternatives.
For example, the Hospice of Texas suggests this checklist approach in advising families seeking its services (http://www.hospiceoftexas.com/checkList.cfm).
Imagine yourself in a situation in which you cannot make decisions for yourself.
* If you had a terminal, irreversible disease, would you want to be treated with antibiotics to cure an infection that might lead to your death, such as pneumonia?
* If you had a progressively debilitating disease, such as Parkinson’s disease or Alzheimer’s disease, would you want to receive artificial (tube or IV) fluids and nutrition? If so, is there a point at which you would want this treatment stopped?
* If you were in pain, would you want aggressive treatment to manage your pain, even if it might shorten your life?
* How would your doctor’s opinion about your chances of recovery affect what kind of treatment you would want in these and other situations?
Of course, this makes life more complicated for professionals who have to deal with these in practice. But life isn’t simple.
And, in these classic lines from Dylan Thomas, I can find no better advocate for “Full Code:”
Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.
Dr. Ira Rosofsky is a nursing home psychologist and the author of the new book “Nasty, Brutish and Long: Adventures in Old Age and the World of Eldercare (Avery/Penguin). [See a McKnight’s blog entry about the book here.]