Remember “death panels”? No, this is not a reference to “Star Wars,” but like the Death Star, “death panels” was a work of fiction from opponents of the Affordable Care Act when it was being enacted.
This bit of egregious disinformation alleged that part of the legislation involved establishing death panels that would determine whether individuals would be eligible to receive life-saving care. Nothing of the sort was ever part of the legislation, but the phrase was used as a scare tactic.
The intent of this portion of the ACA was to encourage people to think about and to have a plan for having medical care decisions made in the event of decision-making incapacity. The legislation also was designed to encourage health care providers to initiate discussions about what their patients would want done for them if they could not express those wishes.
This is what is commonly referred to as Advance Care Planning, or ACP. The idea is to declare, in written form, what type of care one would want in situations when one is incapable of making or expressing a decision.
For example, an elderly person with multiple chronic conditions may decide that in the event of a cardiac arrest, he or she would not want to have CPR performed, or intubation with ventilator support or placement of a feeding tube.
The problem is that many times these decisions are having to be made when the patient lacks capacity to make or express those decisions. The treating physician then has to rely on a spouse, or other family member to make a decision in a stressful, pressure packed situation.
This frequently occurs in a setting in which there has been no previous discussion of what the patient would want done. This written document goes under various names, among them, Advance Directive or Living Will.
The advantage of these directives is that these decisions have been made in advance, in a less stressful atmosphere, carefully thought out and without time constraints. The Advance Directive can be amended, much like a regular will.
A disadvantage of the written document is that not every situation can be anticipated. For this reason, it is also a good idea to have a Medical Power of Attorney. A Medical Power of Attorney is a person, or persons, who are authorized to make medical decisions for another individual in the situation where that other individual is unable to make those decisions for him or herself.
The medical power of attorney should be someone who knows the patient well and, it is hoped, someone who has discussed with the patient what the patient’s values and desires are with regard to life extending care. As with the Advance Directive, the medical power of attorney only makes those decisions in the situation where the patient is unable to do so.
The goal of advance care planning is to avoid unwanted medical interventions, including futile care which merely delays the inevitable.
Of interest, a number of studies have been done to try and determine if advance care planning produces the desired results of care consistent with patient wishes. According to an opinion piece in the Oct. 26 edition of the Journal of the American Medical Association, ACPs have frequently not been found to provide improved patient quality of life or care consistent with patient goals.
The authors also state that these studies do not show a reduction of Emergency Department visits, Hospitalizations and ICU care utilization compared to individuals without ACPs
How could this be? In essence, the supposed strength of making decisions ahead of time may turn out to be its weakness. There is a significant difference in making these decisions when there is no imminent danger, compared with making the decisions on spur of the moment events, with one’s survival in the balance.
As the article’s author states, “Surrogates (family members or POAs) find it difficult to (determine) treatment decisions in the present from hypothetical discussions with patients that occurred in the past, piece together what the patient would have wanted, disentangle their own preferences and emotions or challenge physicians who recommend different treatments. Also, there are times when a decision must be made and the directives are absent, poorly documented or either so (specific and narrowly made) or so vague (that they can’t be relied on).”
(Note: parentheses represent paraphrases — that is, except this set)
So, what is to be done? Among other suggestions, the author states that training physicians and lay people to engage in discussions of care planning, not in the hypothetical distant future, but both in the near future and in real time would yield results more consistent with patient’s wishes. What you think you may want in terms of care now may be entirely different when you are staring at your potential imminent demise.
I believe that both advance planning and real time “anticipatory” planning is needed. I believe an Advance Directive is useful as a framework, and much like our Constitution, the Advance Directive is always capable of amendment, and like a will, should be periodically reviewed.
Your philosophy and goals can certainly change with time. When they do, a discussion with family, medical power of attorney and your physician can be important in updating their knowledge of your goals and wishes.
On behalf of that team, the clinic management staff and administration of the clinic and hospital, I would like to wish the Hampshire Review readership a most Happy Thanksgiving.