Physicians Asked to Help ALS Patients Die Must Evaluate Motivations, Alternatives, Case Report Says

Physicians Asked to Help ALS Patients Die Must Evaluate Motivations, Alternatives, Case Report Says

Physicians who help amyotrophic lateral sclerosis (ALS) patients die should carefully evaluate their motivations, capacity, and care goals, while also discussing alternatives with their patient, according to researchers.

An ALS patient case and commentary, “How Should Physicians Care for Dying Patients with Amyotrophic Lateral Sclerosis?” appeared in the AMA Journal of Ethics.

The researchers presented the case of “Dr. S,” a palliative care physician in Washington state, which passed the Washington Death with Dignity (DWD) Act in 2008.

Dr. S had been caring for Donald, a 49-year-old ALS patient who used to be a professional violinist and a marathon runner. Donald was diagnosed the year before and his disease worsened rapidly.

At the time of his latest appointment with Dr. S, Donald needed a wheelchair and required help to bathe, use the bathroom, dress, and eat. He was unable to use his hands. Although still able to breathe independently, his swallowing function was worsening. As a result, he had started a diet of pureed food and thickened liquids.

At the appointment, Donald said that, after much thought, he decided to end his life. He said that ALS had taken away everything that defined him or gave his life meaning, and that he was not comfortable being totally dependent on others.

He considered that progressing to respiratory assistance or losing the ability to eat or talk would be unacceptable.

“Right now, I can eat. I can talk. I can breathe. I want to die before I lose anything else of importance to me,” he told Dr. S.

Donald asked Dr. S to help him end his life as he was no longer able to do so. Dr. S, who had received such requests before, believed that, in certain circumstances, it is appropriate for physicians to assist terminally ill patients in dying. However, he found Donald’s case troubling as, given the patient’s inability to take any medications prescribed to hasten his death, the physician’s role would be more than “assistance.”

As Donald could not self-administer the needed medications, he was not able to able to take advantage of the law. Dr. S worried that if not having medical assistance to end his life, Donald could feel abandoned and desperate, and potentially pursue an isolated and/or violent way to die. Given this scenario, Dr. S was wondering how to respond to Donald’s request.

The authors commented that Donald’s case presented a “challenging ethical dilemma that asks us to reflect on the ways in which a physician can act as healer at the end of life.” The legal issues related to physicians who aid in dying (PAD) were also relevant.

They focused on the ethical implications for physicians in difficult situations such as Donald’s, provided ways to honor his wishes, and discussed legal implications.

First, they considered that Donald’s case was representative of the line between physicians and euthanasia, which are differentiated by the extent of physician involvement. Unlike PAD, in euthanasia — which is illegal in the U.S. — physicians administer lethal medications upon patient request.

In Washington state, patients are eligible for PAD if they are able to make decisions, have a prognosis of six months or less, and are able to take medication on their own. Donald’s inability to do so underlines the fact that ALS is at the center of ethical debates about PAD, the researchers said.

They advise physicians to carefully explore the patient’s motivation before deciding whether to honor the request. Donald’s motivations were clear and common, they noted. The physicians need to be mindful of their own responses as physicians who help patients die may evoke strong reactions from patients. Physicians need to weigh the harms and benefits, while “seeking to maximize beneficence, nonmaleficence, respect for autonomy, and justice as relevant to the case,” investigators wrote.

Dr. S must determine what a “good life” and a “good death” represent for Donald, although he should be mindful that the meaning of life may change rapidly, especially in terminally ill patients, the researchers said.

Once Donald’s motivations have been determined to be truly his own, Dr. S should obtain informed consent from him, both an ethical requirement to respect Donald’s autonomy and a legal requirement to access the DWD (death with dignity) law. At this point, the physician should discuss with the patient what ALS would be like with or without palliative care, as well as palliative care options. Also, he needs to make sure that Donald is not seeking PAD because he cannot afford palliative care options.

Next, the physician should discuss prognosis and care goals to avoid treatments and other clinical decisions that could be more harmful than provide actual benefits. Here, physicians need to weigh PAD and the harms they see associated with it against refusing to provide lethal medications, the authors said.

Besides palliative care, alternatives to PAD would include voluntarily not eating or drinking, withdrawing respiratory support and life-sustaining treatments, and pain medications that hasten death.

Overall, “this concrete framework would help Dr. S understand Donald’s request and also allow Donald to consider other options that might be better aligned with his motivations and goals,” the investigators wrote.

If Donald still wanted Dr. S to help him die, the physician could consider having Donald’s family members prepare the medication and help put it in his mouth or feeding tube, a procedure that has been used in Washington state, according to the authors.

As Donald would then self-administer the medication, he would be able to exercise his autonomy. This would preserve the patient-physician relationship, and be ethically permissible and legal in Washington state, they said.

However, this option is controversial in other U.S. states, as it could be seen as euthanasia. “Currently, this option resides in a legal and ethical gray zone,” the investigators noted.

Of note, the study’s senior author, Elizabeth Dzeng, an MD and PhD, is a professor at the University of California, San Francisco (UCSF) and has been involved in the statewide and UCSF response to PAD legalization in California.

10 comments

  1. Thu says:

    in this scenario, the als patient has been emotionally & physically torture because the patient could not have euthanasia or assisted suicide which is the patient personal privilege;

  2. Charlie says:

    When a human being is fully fit they have ultimate control over their life or death and the vast majority naturally wish to continue to enjoy the normal features of life as most of us know it. It is ironic that the less ability one has to go about a normal life, as is denied to pALS, the less control one has over the ability to end it.
    The focus remains firmly on legally protecting carers especially healthcare professionals and moves away from the legitimate concerns a pALS has and their wish to end the torture. No-one, not even a neurologist, completely understands the patient’s personal demeanour and wishes, and dare they (pALSs) attempt to express them a flurry of paperwork and CYA procedures soon act not to help the patient but to primarily protect the crowd around the sufferer.

  3. Charlie says:

    ‘….should carefully evaluate their motivations, capacity, and care goals, …’

    This wishy-washy ‘care goals’ carp is one of the phrases that makes pALS vomit.

    There is no ‘goal’ in this for pALS, just routes to the last station on the line. Those routes cannot and should not be described by this ridiculously inappropriate word.

    A pALS will not start the day with the thought…”Hooray ! My ‘goal’ is to have a pipe inserted in my stomach!” Or “Yippee my ‘goal’ is to have invasive breathing assistance!”

    A legitimate ‘goal’might be to find a doctor who would help the pALS end this nightmare without actually soiling himself in analysing the problem whilst the patient’s desperate wretchedness and suffering continues.

    When you think about it we all can fall victim of loss of control of a situation at a time when we might find our own courage to say’enough.’

  4. Charlie says:

    “Dr. S must determine what a “good life” and a “good death” represent for Donald,…”

    Utter BS.

    Donald is the one who must decide these. It’s Donald’s life and no-one else’s. As long as Donald can make cogent decisions and communicate them then it is what he wants that is paramount.

  5. CHRISTOPHER says:

    Just…wow! I thought that my diagnosis was sad. The BS in politics, “pharmaceutical research”, weak theories, and the list goes on. Is truly, sad. I have always thought of myself as a positive person. I have never seen so much (nothing) getting done by human beings. Not to mention focus. Focus on what is wanted and needed by the ALS community. I’m new to this ALS thing. Charlie, you seem to have a strong grasp on what’s going on. You have anything positive for me to hold on to?

    • Charlie says:

      Hold on to the love of your family. Cherish every second of every minute of every hour of every day that is left with them. Pray to science (not to the Fairy God Father- he’s not listening) that they stumble over an effective treatment before time runs out. Don’t buy the BS.
      My wife died from ALS today. 26 months from diagnosis.
      I’m done here. I can’t do this any more. I am broken.It has beaten me as a carer, too.

      • Lana says:

        Dear Charlie, I have truly looked forward to reading your replies, I hope you will continue to grace us pals with your insite. So sorry for the loss of your wife. This disease is so devasting to us, our caregivers and loved ones.

      • fran lancaster says:

        Charlie – I just lost my husband to ALS two weeks ago. 6 years from diagnosis. I feel like I have been in a war for the last 3 years and I am the walking wounded. I am sure you feel the same. Knowing the outcome, still did not lessen the sadness when it happened. I could not analyze this disease while I was “in it” as a caregiver, I could not mourn all the losses along the way as I had to hold hard and be strong in order to keep going. It has only been now, since he has died, that I am starting to comprehend the fall out of this effed up disease

  6. Please consider the following excerpt from the Affidavit of John Norton, diagnosed with ALS:

    http://www.massagainstassistedsuicide.org/2012/09/john-norton-cautionary-tale.html

    3. The ALS diagnosis was confirmed by the Mayo Clinic in Rochester Minnesota. I was eighteen or nineteen years old at the time. By then, I had twitching in both hands, which were also getting weaker. At some point, I lost the ability to grip in my hands. I became depressed and was treated for my depression. If instead, I had been told that my depression was rational and that I should take an easy way out with a doctor’s prescription and support, I would have taken that opportunity.

    4. Six years after my initial diagnosis, the disease progression stopped. Today, my condition is about the same. I still can’t grip with my hands. Sometimes I need special help. But, I have a wonderful life….

    5. I will be 75 years old this coming September. If assisted suicide or euthanasia had been available to me in the 1950’s, I would have missed the bulk of my life and my life yet to come.

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