While we're on vacation, we're re-posting content from earlier in the year. This post was originally published on April 27, 2011.
By Liz Borkowski
Last week, Andrew Sullivan noted that a large proportion of healthcare costs are for the last days and hours of patients' lives and made the following proposal:
If everyone aged 40 or over simply made sure we appointed someone to be our power-of-attorney and instructed that person not to prolong our lives by extraordinary measures if we lost consciousness in a long, fatal illness or simply old age, then we'd immediately make a dent in some way on future healthcare costs.
He goes on to note that this would be entirely voluntary, and suggests "an easily reached website that makes such a legal process easier to accomplish."
Ezra Klein followed up by suggesting that to be eligible for Medicare, people would have to give someone power of attorney (specifically healthcare power of attorney, I assume) and sign a living will. I think creating additional barriers - ones that would be particularly onerous for people with limited literacy or difficulty finding people they trust to make healthcare decisions for them - to getting Medicare is a bad idea. I do appreciate that he specifies people could choose to get every medical intervention possible; the point is just to get people to specify what they want, not to influence what it is they want.
I certainly do encourage everyone to give healthcare power of attorney to someone you trust, and to create and sign an advance directive. (The National Hospice and Palliative Care Association is a good resource if you're looking for forms and explanations.) But getting this paperwork in order isn't enough.
First of all, if you haven't read them already, I suggest checking out the recent pieces from Atul Gawande and Katy Butler about difficult healthcare decisions for people nearing the end of life. They paint vivid pictures of the kinds of choices that we have to make about care for ourselves and our family members. Butler also left a comment on a post I wrote about Gawande's article, pointing out that having an advance directive isn't sufficient if family members aren't on board with what the patient has decided:
A doctor at a major teaching hospital recently told me that family members frequently countermand advanced directives. She suggested you involve all relevant family members ahead of time and make sure that they can accept your plans. Otherwise, you run the risk that your semi-estranged, perhaps guilty-feeling child or sibling will fly in at the last moment and insist everything be done.
So, write down what kind of care you might want in different circumstances - and then discuss your wishes with your family members and ask them for their support in getting those wishes carried out.
Family members aren't the only ones who are important when it comes to implementing advance directives; healthcare providers are the ones who are actually in a position to deliver the requested level of care. In a 2007 Annals of Internal Medicine piece on advance directives, Henry S. Perkins highlights (among other challenges) the issue of physician non-adherence:
Of course, some circumstances justify not honoring advance directives. Physicians may not have copies and may rightfully hesitate to rely on hearsay from others. But even advance directives in hand may have questionable validity. Patients may lack decision-making capacity when they sign advance directives, may create interceding advance directives, or may fail to update instructions as conditions change. Moreover, physicians may question whether the stated circumstances for invoking an advance directive, such as a "hopeless" illness, have materialized (59). Physicians may also feel obliged to disregard advance directives that conflict with hospital policy, family preference, or ingrained practice habits. Still, most physician nonadherence to advance directives probably stems from physicians' miscommunication or misunderstanding about patients' wishes.
Given that most people's advance directives are probably written in very general terms, it's not surprising that a physician might struggle with deciding whether or how much to act on wishes the patient recorded under very different circumstances. Ideally, a patient whose healthcare condition has been worsening over time would have periodic conversations with her doctor about her prognosis and treatment options, and would be able to consider and communicate her wishes to reflect her changes circumstances. But far too many patients don't have those conversations with their doctors.
The good news is that more doctors are getting training in how to have conversations with dying patients. Marketplace's Caitlan Carroll visited the Institute for Palliative Medicine at San Diego Hospice, where medical fellows learn skills that focus on caring rather than just curing. As I noted n a post about cost savings associated with hospital palliative care teams, the percentage of American Hospital Association member hospitals reporting that they have palliative care teams has increased from fewer than 10% in 2000 to 60% in 2010. This hasn't necessary led to all eligible patients getting consultations from those teams, though. Delivering high-quality, appropriate care to patients with advanced illness is still a work in progress in the US.
So, yes, advance directives and healthcare powers of attorney are important tools in the pursuit of high-quality, cost-effective healthcare. Better communication - between patients and their family members and between patients, families, and providers - is also essential.
No easy answers.
Further indications that appointing a trusted surrogate is not the end of the process, partly because of the limited language of most living wills:
"Questioning the Decision-Making Capacity of Surrogates," (2003) by bioethicist Katrina Bramstedt, then of Cleveland Clinic, describes a case in which a surrogate is described as "ranting", "agitated," and insistent that her relative "be allowed to die." The bioethics and medical teams decided the surrogate's behavior indicated she lacked decision making capacity and was projecting her own values.
The patient's living will only required disconnection of life support in case of coma or terminal illness. The patient was diabetic, unable to communicate her medical wishes despite lightening of sedation, septic, on dialyisis & a respirator. She had had sepsis, kidney shutdown, & multiple strokes following a re-do of a heart bypass. She had been in intensive care several weeks. In the opinion of the medical team, however, she was not terminally ill or comatose as her living will specified. After another three weeks in ICU, she was moved to a nursing home, where after 4 days she suffered another septic & respiratory crisis, & was returned to the hospital. Her condition was then judged terminal & she died within hours without additional interventions.
I was not there, of course: but is it possible that the surrogate was "agitated" because of the situation, not because of the projection of her own values? And whose values were being projected in the absence of input from the surrogate?
A cautionary tale for surrogates and patients; underlines the importance of good communication, before, during and after a medical crisis.
Thanks for the link - as you say, no easy answers. It's a reminder of how surrogates not only have to face difficult decisions about a loved one's medical care, but worry about how they're coming across to a medical team.
It's certainly appropriate for the team to question whether a surrogate is being guided by his or her own values rather than the patient's -- but I could envision situations in which the surrogate is indeed guided by the patient's values but does not come across that way. When surrogates have difficulty communicating (due to emotions, language issues, unfamiliarity with medical terminology, or something else) it must take a skilled provider to create an environment that minimizes agitation and maximizes productive conversation.