Where do I Store the Name of your Dog?

Following a long office day of wrestling with my current nemesis, our office electronic medical record (EMR), I was pleased to read a lovely article by Dr. Taimur Safder in the current NEJM entitled “The Name of the Dog”. I’ll not summarize it as the link is free and the article is short and makes the point of today’s blog wonderfully.

I realize the EMR is not actually alive and, lacking agency, is unable to act as my archenemy and cause my downfall, or that of my patients. Further, I have a degree in electrical engineering so the technology of the EMR is not the issue either. I will grant that current and future data mining of the EMR may benefit untold numbers of patients. I will also concede that EMRs will (eventually) be bolstered with AI tools that will improve diagnostic accuracy and reduce or eliminate costly unnecessary testing.

My concern is that the EMR causes me to focus so much on the data collection that I spend less time getting to know my data source (my patient) as more than the sum total of discrete data points. There really isn’t any good place in the EMR to put the name of my patient’s dog. If I am going to treat my patient as more than a something, perhaps as a someone, then more than just reductionistic data acquisition and processing will have to take place.

With that in mind, please take a moment to view one of my favorite paintings by Sir Luke Fildes at the Tate Gallery called “The Doctor”. The painting depicts a country doctor sitting at the bedside of a young patient, with the child’s parents in the background. One can imagine the concern of the child’s father and almost feel the anguished prayers of the child’s mother, but both are interestingly relegated to background positions in the painting. The focus of the painting is the focus of the lamp in the painting – the country doctor and his patient.

Medicine in the 19th Century was limited in terms of meaningful data collection and limited further by actual effective treatments. In other words, the EMR of the 19th Century could have been completed in mere minutes and the diagnosis and treatment, such as it was, rendered in a few minutes more.

Given those limitations, perhaps not surprisingly, one gets the sense that the depicted outcome was far from certain and also that the country doctor had been in the home a while – there was at least time for tea at the table. What on earth was he still doing there? Maybe in absence of a definitive diagnosis and immediate cure, what the doctor could provide was his time, his empathy and his focused, loving concern. One gets the sense he would likely remain with his patient and the family as long as he was needed to offer what help and hope he could.

That seems like a reasonable example of how one imago Dei might care for another.

Would that I could consistently convey that level of steadfastness, that empathy and that loving concern to all of my patients without frantically looking for that special place in my EMR to store the name of your dog.

Avoiding advanced dementia, part 2

By Steve Phillips

Last week I wrote about one of my moral concerns regarding Norman Cantor’s proposal to avoid advanced dementia, which he views as being intolerably degrading, by using an advance directive stating that when he reached a certain level of dementia he no longer wanted to eat or drink so that his death would result. My concern with this was that the person caring for him would have to concur with him that his life at that time was no longer worth living in order to justify following his directive and cease to feed him and give him fluids to drink. An independent assessment that another person’s life is not worth living is required of any physician or other caregiver who participates in euthanasia or assisted suicide. Such a determination that another person’s life is not worth living is something that we should never do and the need for that determination is a fundamental reason why euthanasia is not permissible.

Dena Davis in her article “Avoiding Dementia, Causing Moral Distress” agrees with Cantor that a person ought to be able to use an advance directive to end his own life to avoid advanced dementia, but sees a flaw in Cantor’s plan. She writes, “As long as the demented person is enjoying her diminished life, it will be psychologically and emotionally difficult, perhaps impossible, for most people to withhold food or even simple medical interventions. Even if they believe they ought to comply with the advance directive, the moral distress is simply too great.” She concludes that since a person cannot rely on others to follow an advance directive like Cantor’s, the only way to avoid advanced dementia is preemptive suicide. The article “A Debate over ‘Rational Suicide’” in the New York Times describes 80-year-old Robert Shoots doing just that.

My second concern is that it is wrong for us to choose to end our own life by rational suicide even if no one else participates in that act. Autonomy and personal liberty are important, but there are some things that can be wrong to do even to ourselves. This is easier to see from a Christian perspective. Christians understand that our lives belong to God and we do not have the authority to end our lives. That authority belongs to God alone. We have been commanded not to kill any innocent human being because we have all been made in the image of God. That includes a command not to end our own lives.

It can be harder for someone who does not understand that his life belongs to God and has value because he has been made in God’s image to see why rational suicide would be wrong. However, all of us are relational beings. We are connected to our families and the rest of humanity. What we do to ourselves impacts others. Those who contemplate rational suicide to avoid things such as advanced dementia forget how their deaths impact others. They have a desire to avoid a part of life they do not want to live and may want to relieve those who love them from the burden of caring for them but caring for those we love when they become dependent is an opportunity for us to be more fully human. Caring for a loved one with dementia is very hard but is one of the ultimate expressions of human love. We should not take that away from those who love us.

Getting the Best Possible Organs for the Rest of Us

By Mark McQuain

A recent September 6th Perspective in the NEJM entitled “Voluntary Euthanasia – Implications for Organ Donation” teases with the following lead-in:“Canada now permits physicians to hasten the death of a patient by means of physician-assisted suicide or voluntary euthanasia. This development creates a new pathway for organ donation – and with it, some challenges.” Kudos to the NEJM marketing department for luring me into finally buying a full subscription. I’ll summarize some key points for those without a subscription.

The article begins by summarizing some differences between the comatose patient receiving end-of-life care in a standard ICU environment and the situation of individual intending voluntary euthanasia in a hospital. Healthcare teams may rely on surrogate decision making in the first instance but require first person consent in the euthanasia instance. Also, use of sedatives and analgesics in traditional end of life care are guided by the doctrine of double effect (intending comfort but not death) whereas physicians are not legally required to titrate those same medications in the instance of voluntary euthanasia (where euthanasia is legal). These issues are effectively the non-controversial portion of the article.

The heart of the article dealt with what one ought to do in the situation of a patient who wants to donate his or her organs “in the best condition possible” while receiving voluntary euthanasia. This would involve “procuring the patient’s organs in the same way that organs are procured from brain-dead patients (with the use of general anesthesia to ensure the patient’s comfort).”

The problem is that these patients aren’t brain dead yet. The authors are frustrated that awaiting brain death, even in voluntary euthanasia, results in sub-optimal quality of the donor organs. Harvesting organs from voluntarily euthanized patients before they are brain-dead “would require an amendment to the Criminal Code of Canada, which defines medical assistance in dying as the administration of a ‘substance’ by a qualified provider. By this definition, organ retrieval is not an accepted cause of death.” (N.B.- Though it most certainly is the cause of death!)

For those unable to retrieve the NEJM article, I offer a similar article by Dominic Wilkinson and Julian Savulescu supporting the same ethical argument (that it is OK to cause the death of an individual by harvesting their organs if they wished voluntary euthanasia). They summarize Dr. Robert Truog’s bioethical position (one of the authors of the present NEJM article) in footnote 66 as follows:

“Truog’s justification for ODE [Organ Donation Euthanasia] is different from that presented here [in our paper]. He argues that current concepts of brain death and the dead-donor rule are incoherent, and he proposes an alternative based upon the principles of autonomy and non-maleficence. We find Truog’s arguments compelling. Our paper can be seen as providing a complementary argument in favour of ODE. Truog favours a narrow definition for the group of patients who may consent to this procedure: only those who will die within minutes of withdrawal of life support, or who are permanently unconscious. Our definition of LSW [Life Support Withdrawal] donors overlaps with Truog’s, but includes the larger group of patients from whom it is permissible to withdraw life support in intensive care, and whose death is highly likely to ensue (though not necessarily instantly).”

To be blunt, what both groups are arguing is that it should be OK to surgically remove organs from an individual who is not brain dead though has already consented to voluntary euthanasia, knowing that the surgical removal of the organs will cause the immediate death of the individual. The priority of marrying euthanasia and organ donation is obtaining the best possible organs for the rest of us.

As a counter argument, I again turn to Wesley Smith for his thoughts in a recent National Review article similarly entitled “Canada Conjoining Euthanasia/Organ Donation”. It is short and to the point.

I must concur with Wesley Smith: The slippery slope of euthanasia is getting more slippery. How long before we grease those skids further by paying for the organs so harvested?

The Benefits of your local Medical Ethics Committee Consultation

By Mark McQuain

No doctor or hospital system is perfect and, frankly, no one would ever claim to be. Regardless, we hold some medical facilities in very high regard simply because of the consistency of their record of care. One such place is the Mayo Clinic in Rochester, Minnesota. So, it was somewhat of a surprise to see a CNN headline featuring a complicated medical ethics issue gone awry. The story is long and admittedly somewhat one-sided, with more she said than he said. Still, the story as told is instructive by reminding everyone that medical ethics cases are complex, and it is usually best never to “go it alone”.

Briefly, in 2016, a 18-year-old young woman with a brain aneursym was transfered to the Mayo Clinic for urgent surgical treatment. Her surgery went well. The problems did not really begin until she was recovering on the inpatient rehabilitation unit. The patient and family became dissatisfied with her care. The staff believed that the patient was unable to make informed medical decisions due to alleged changes in her cognitive status as a result of treating the brain aneurysm and rather than appoint a family surrogate, began the long complicated process of trying to arrange for third-party guardianship. The mother and stepfather, in advocating for their daughter, came into conflict with the rehabilitation staff, resulting in the mother being banned from the hospital. The staff reached out to the biological father but he declined to become involved. The staff apparently believed the family to be unreliable and began a process to acquire a third party guardian to assist the patient with her medical decisions. The family and patient came to feel the patient was imprisoned against her will. The patient and her family eventually arranged “her escape” after which the rehabilitation staff called the police, claiming the patient was “abducted”. The patient has and is continuing to recover apart from Mayo. The legal issues remain.

Medical ethicists who have reviewed the details of the case agree on at least one detail: Mayo should have utilized their medical ethics committee to assist in determining how best to handle the patient’s possible lack of medical-decision-making ability, and in determining who might best serve as the patient’s surrogate if such was needed. Most medical providers have become involved in contentious medical decision making, where the patient and/or family comes to disagree with a recommended treatment plan by the medical staff. Involving the hospital’s medical ethics committee can be an excellent resource to regain dialog with the patient and family, and hopefully come to a medical decision that best benefits the patient.