An end-of-life physician examines the role of doctors in the process and what you should understand about current legislation on physician-assisted dying
Scenario 1: A woman with advanced cancer was in the active dying process over many weeks. She had a fluctuating state of consciousness, did not have capacity or mental awareness to understand decisions. The family was divided about the course of care and were dysfunctional among themselves with exes and in-laws and out-laws and children who didn’t know each other.
I was the attending physician/oncologist, and there was a clear inquiry about “speeding up the process” so they could leave town “with a clear conscience.” This was not an environment for an ethical debate over end of life and whether we physicians could assist the process, but as I pondered this request, it did not take a Harvard-trained expert in bioethics to see how the situation could be played out in many clinical scenarios “for the convenience of everyone.”
Scenario 2: In the ICU of a major medical center, the attending lung physician (pulmonologist) explained to the patient, a man in his early fifties, about an investigational protocol where the patient could receive an experimental treatment or by a flip of the coin could be receiving standard treatment for his grave condition.
I was at the bedside, in the room when the conversation took place, and the well-respected pulmonologist took the lead in discussing the situation with the patient and the family. He was thoughtful, he was thorough, he used medical language that was appropriate for the patient. And having been in this space hundreds of times myself, I admired his clarity, compassion, and professionalism.
The patient had full capacity, signed the informed consent document for the experimental treatment, and felt comfortable to participate. By random selection (flip of the coin) he received the investigational program.
Several months later my colleague contacted me, and he was beyond devastation. There had been another healthcare provider in the room who lodged a formal ethical complaint that the physician “pressured, pushed, coerced the patient” into the clinical trial. I was there, I heard the conversation, I felt the energy in the room, and this was simply not the case.
The accuser was a healthcare provider who had some subtle agenda about clinical trials and using patients as test subjects, and the administrative process of resolving this complaint went on for months, and it was devastating for the physician. This underscored for me the unbelievable challenges of trying to discuss a complex medical topic in the heat of battle, when the risks and consequences are enormous.
Scenario 3: A beloved brother-in-law is in the depths of profound dementia. He had been a prominent businessman in a small community where he was revered and honored for his technical and administrative skills. He was a faithful spouse and a devoted father. As his disease progressed, he had almost no short-term memory, could not follow simple commands, was challenged with the needs of personal hygiene, and could no longer be managed by his spouse at home.
He was lovingly admitted to a long-term memory facility. The price tag: $12,000 a month. Not per year, but per month. And this figure could be escalated if there were additional needs such as being fed or requiring monitored surveillance to be certain that he did not wander from the property.
Now, we can see where this is heading. It certainly is not unthinkable that in a dystopian culture where economics are drivers of decisions the family could have discussions about de-escalation of care because of financial imperatives.
I recall discussing with the family of a dying cancer patient some reasonable and appropriate imaging studies. I was subtly horrified when a family member made the comment, “All these tests burn through my inheritance.” It does not take a social scientist to see that the slippery slope is not a slope, but this is a cliff and it is here now.
What Do We Call It?
Death with dignity acts have been legalized in ten states. Some people mistakenly call it physician-assisted suicide or euthanasia, but the more descriptive terms are physician-assisted death or aid in dying.
Death with dignity statutes allow mentally competent adult residents of a United States state who have a terminal illness with a confirmed prognosis of having six or fewer months to live to voluntarily request and receive a prescription medication to hasten their inevitable, imminent death. By adding a voluntary option to the continuum of end-of-life care, these laws allegedly give patients dignity, control, and peace of mind during their final days with family and loved ones.
The protections in the statutes, according to the nonprofit Death with Dignity National Center, are to ensure that patients remain the driving force in end-of-life care discussions.
Existing physician-assisted dying laws mirror Oregon’s Death with Dignity Act, which is widely acclaimed as successful and which independent studies prove has safeguards to protect patients and prevent misuse.
The death with dignity process is robust: Two physicians must confirm the patient’s state of residency, diagnosis, prognosis, mental competence, and voluntariness of the request. Two waiting periods — the first between the oral requests, the second between receiving and filling the prescription — are required.
What Do Dying Patients Fear Most?
But let us look at the data. Overall, the primary concern of the terminally ill in most published studies and in my medical practice as a palliative and hospice physician at the Mayo Clinic is fear of being a burden and to know that resources are available to end their life.
In an iconic documentary on this issue, a patient is given a prescription by a healthcare provider for barbiturates and other medications, which are then used to form a “slurry” that the patient drinks himself or herself without direct assistance of a healthcare provider. And the patient, surrounded by loving family and friends in the film, then drifts off into a coma-like state followed by death. The seamlessness and the efficiency of the process is noteworthy.
But as with any governmental/administratively sanctioned procedures, we now know the dangers of this approach.
As more states ramp up similar death with dignity acts, let us examine some of the intrinsic consequences of this approach.
1. No mental health evaluation is required. If patients are depressed or anxious, they may ask for this intervention without fully understanding the consequences.
2. Witnesses are not required so coercion could be a threat.
3. Clinicians are notoriously inaccurate in estimating length of life.
4. Individuals with intellectual, cognitive, and developmental disabilities are particularly vulnerable and may not understand the implications of their decision. In the Netherlands, there are studies of elderly individuals receiving these medications unilaterally from their healthcare providers.
5. There may be legitimate concerns about the distribution of a patient’s assets, and fraud may be a concern.
6. Equally important, these particular acts through legislation can irreparably undermine the view of the healthcare provider community. We are trained, in some circumstances take an oath to heal, to cure, to comfort, and that oath may be denigrated if there were widespread acceptance of physicians euthanizing patients.
7. With the chaos in our communities from economic, political, and scientific perspectives, with the bitter divisiveness along racial and ethnic lines, we are heading toward a dystopian culture where life may not be viewed as sacred and may be ended — sometimes without the patient’s full input under relatively trivial circumstances.
We healthcare providers take an oath to cure patients and comfort families during dark days. These three scenarios illustrate the emotionally charged situations with documented potential for manipulation and coercion of the patient.
How Many Patients Actually Use the Option?
The Oregon laws have become the national standard for right to die programs. Of note is that less than 1% of eligible patients have elected to end their own life. But patients are requesting to have that option even though it may never be used.
As a medical oncologist, and with a hospice and palliative medicine background, I feel a palpable anxiety in the profession that despite all sorts of rigorous administrative, technical, and ethical safeguards, no system is foolproof. No system is without risk.
As our society becomes increasingly divisive, as end-of-life narratives grow more bitter, we need to clearly understand that the genie of assisted death is already out of the bottle and we are on the threshold where the healthcare community may be expected to accelerate the dying process as in scenario 1, or force patients to try experimental treatments that may not prolong life as in scenario 2, or withdraw end-of-life care to conserve money as in scenario 3. Such situations open up Pandora’s box for a host of potential abuses.
Shedding Light and Offering a Solution
The light of hospice medicine and palliative care is at the end of this tunnel. This is a subspecialty of internal medicine requiring a formal training program and passing a certifying examination. Having been the first Mayo Clinic consultant board-certified in the specialty in 1996, I know there is a curiosity about what we do, but it was not widely recognized.
Today, we now know that when patients are cared for under the umbrella of a hospice and palliative medicine team, 80 to 90% of patients will die with relative peace, dignity, and comfort. Pain in most circumstances is manageable and there are methods for addressing anxiety, nausea, vomiting, and bowel and bladder issues. There is also an acknowledgment of the spiritual and emotional dimension of illness — and death.
This specialty is certainly no assurance of the “good death,” but it does offer an option for patients to die on their own terms with the peace and dignity we all seek.
