“Because the boundaries of the field are poorly defined, credentials often serve as a gatekeeping mechanism….” Leah Pierson, bioethicist.
The recent creation of the Healthcare Ethics Consultant-Certified (HEC-C) program, … “identifies and assesses a national standard for the professional practice of clinical healthcare ethics consulting,” which may start establishing standards, but, complains bioethicist Leah Pierson, the test, at $495.00, a pop -- is too expensive – especially with no financial aid available..
Maybe it’s not such a bad thing. Without clear, universal (moral) standards, binding (common law) precedent, or received wisdom (aka religious doctrine), bioethicists are free to suggest what might be perceived as “strange” or even “unfortunate” solutions to vexing problems, perhaps militating – for now- against proliferation of the field. Here’s one example:
Advanced Directives
Many people have advanced directives which instruct caregivers or loved ones how to respond as a patient nears the end of life. Lawyers charge lots of money for preparing the instrument and they are quite detailed. Some of the many questions posed to the signor of the directive include:
- How much pain would you be willing to suffer before they turn off the life support?
- How far gone do you want to be before life support is withheld?
Where the patient is hanging on to life by a thread, such proclamations can and do aid some courts to allow life-support to be terminated (1). That is, if the caregiver or relative is of like mind with the would-be decedent.
What lawyers don’t tell you is that in most jurisdictions, these directives are unenforceable. If your loved one doesn’t want to terminate your life support – even under the very conditions you went to great length to explain, no one can compel the directive to be carried out, other than perhaps the hospital or hospice under limited conditions.
But some intrepid bioethicists have produced a solution, based on the Norplant implanted contraceptive devices that self-activate. Margaret Battin and Brent M. Kious, propose implantation of a device which automatically triggers a lethal drug at the onset of dementia. At this point their proposal, reported in the respected Bioethics Journal, the Hastings Center Report is hypothetical, but the technology, based on the implantable Norplant contraceptive, is technologically feasible. Couched as a thought experiment, the authors propose consideration of:
“an advance directive implant which would enable persons with early dementia, while competent, to arrange their own deaths without the subsequent intervention of anyone else.”
This Advance Directive Implant or ADI “would be reversible and programmable and would cause death instantaneously. It would probably be implanted at the onset of dementia and programmed to activate according to the prognosis for the disease.”
Of course, the course of dementia or Alzheimer’s themselves are not programmable, and dementia patients may find that with adequate family or social support, they are in no hurry to leave this world, contrary to their assumption at the time of the implant. Nevertheless, the authors contend that the impact and imposition of great burdens on the survivors need to be considered – and may be paramount.
Justifying their proposal, these physician-bioethicists first claim that:
“[f]or some, a life that ends in profound dementia is perhaps the worst fate one can realistically foresee.”
Of course, this contention is at best speculative, since one cannot know – in advance- just how the condition will affect the patient. Hence, it is not surprising that these authors venture to next claim that:
“[p]erhaps the greatest advantage of ADIs is that they would reduce the distress that living and dying with dementia imposes on others.”
Maybe
Focusing on the needs of the caregiver – at the expense of the patient- leads us down the rabbit hole. Consider a drug that might prevent the onset of the “death rattle,” the hiccupping raspy sound due to the buildup of mucous that plied the pages of novels by Twain and Dostoyevsky and signals imminent death. For those who’ve never heard it- the death rattle is a startling and vivid proclamation that the grim reaper is standing ready to claim his next victim –ostensibly more disconcerting to onlookers and caregivers than to the patient. Although most reports claim that its onset occurs days before death, I’ve witnessed a case where the patient experienced the “hiccup” for six weeks before he died.
This is not a hypothetical case; there is an anti-cholinergic drug that might prevent the condition, although at present it is not licensed for use by the FDA. Recently, one clinical trial found that it is (moderately) effective, ostensibly with minimal side-effects – although not necessarily at the higher doses necessary to achieve the desired quieting effect. [2]
This recent research suggests that administration of the drug prophylactically may prevent onset of the condition. But, at this point in the course of the patients’ disease, these patients are in no state to provide informed consent. Here, too, we see recently raised suggestions that advance written consent might be secured from dying patients - although regarding what stage in the dying process the consent should be sought, the authors are silent.
“About half of hospice patients weren't eligible [to participate in the clinical trial], ‘largely because of an inability to understand the information and [their] imminent death.”
The dilemma posed by the researchers – a centerpiece of the report – was the difficulty in obtaining informed consent for experimental treatments that only apply to end-of-life situations, when the impact might be of greater benefit to bystanders than to the patient. Imagine being asked the informed consent question regarding an advanced directive when entering a hospital with a fatal disease, albeit one which is not necessarily imminent. What would the consent look like?
“Ms. Smith, should we determine your condition is terminal and death is imminent, would you agree to let us try an experimental treatment, one likely with no benefit for you, and whose side-effects are unknown? However, you might like to know that such treatment might be a comfort to your loved ones.”
Medically speaking, I would say that administration of such drugs could be contrary to the Hippocratic Oath. Legally speaking, I would say that the vulnerability of the patient at such a time could render such consent invalid – unless the patient is quite lucid and is truly exercising their right to autonomy, uncontaminated by guilt or pressure to please their next of kin. Since there are so many unknowns to this treatment and its impact will accrue only when the patient is incapable of reporting on it, I wonder how the consent can be truly “informed.”
The real dilemma in both scenarios is prioritizing the needs of the caregiver and next of kin over that of the patient – to whom the physician owes her primary legal and medical duty. The concern raised in both reports indicates that the primary focus on the needs of the patient is slowly evaporating, with primary concern being placed on the living. Maybe some might say that’s not a bad idea. But at least legally and medically speaking, the prime duty was supposed to be -- to the patient.
[1] Curran v Bonze. 566 N.E.2d 1319 (Ill. 1990);In re Estate of Laneway (1989), 133 Ill. 2d 33, 139 Ill. Dec.780, 549 N.E.2d 292, and In re Estate of Greenspan (1990), 137 Ill. 2d 1 146 Ill. Dec. 860, 558 N.E.2d 1194
[2] “Subcutaneous scopolamine butylbromide (which is not FDA approved) cut the incidence of grade 2 or greater noisy breathing from mucus in the respiratory tract to 13% compared with 27% with placebo.” Effect of Prophylactic Subcutaneous Scopolamine Butylbromide on Death Rattle in Patients at the End of Life JAMA
