As Assisted Suicide Goes To Wire, Some Comfort From A Pain Specialist

(Photo illustration by Alex Kingsbury/WBUR)

According to the latest Massachusetts poll, just out from Western New England University Polling Institute, the assisted suicide question on tomorrow’s ballot is too close to call. Among 535 likely voters surveyed several days ago, the institute reports, “44 percent support allowing terminally ill patients to legally obtain medication to use to end their lives, while 42 percent are opposed. Fourteen percent of likely voters said they did not know or declined to answer the question.”

Question 2, also known as “Death With Dignity,” has surely spurred a valuable discussion about how we die; the most recent opinion in major local media came from the Boston Globe columnist Yvonne Abraham, whose mother’s recently diagnosed Alzheimer’s disease influenced her. But I have also found the conversation deeply disturbing, because so many commenters have shared horrifying stories about bad deaths. One comment on a recent CommonHealth post began: “I served until recently as a hospice chaplain. In my six years in this work, I was often surprised by family members bursting out with their true feelings and saying, “You wouldn’t let a dog suffer like this.”

I have my fair share of existential terror, and stories like these don’t help. It’s bad enough that I have to die; do I have to die painfully? The debate around Question 2 has further confused me. Opponents of the measure argue that pain can be controlled so well that fear of suffering — or suffering itself — is no reason for suicide. But if so, how to explain all the harrowing personal stories of bad ends?

Dan Carr

Dr. Daniel B. Carr of Tufts University School of Medicine (Alonso Nichols, Tufts University)

I turned for guidance to Dr. Daniel B. Carr, director of the Tufts Program on Pain Research, Education and Policy (which has not taken a position on Question 2) and a professor at Tufts University School of Medicine. What, I asked him, is the truth about dying and pain? Is it really as bad as some stories suggest — or can it really be as good as the opponents say?

Let me begin with the good news because it’s so nice to hear some. Massachusetts, he said, is extraordinarily rich in top-flight medical care for the end of life. It’s a pity, he said, that the political debate around Question 2 may distract people from awareness that we have “a wonderful series of support systems in Massachusetts for hospice and palliative care.” He particularly recommended the Hospice and Palliative Care Federation of Massachusetts.

Now to my question. Like any good academic, Dr. Carr had to back up first:

“First of all, the totality of suffering at the end of life often involves pain, but it often reflects other reasons as well. For instance, air hunger in someone who has pulmonary disease, or sleeplessness in someone with so-called Lou Gehrig’s disease. So pain control is a major part of palliative care, but palliative care is broader than just pain control. The concept of “total pain” has been in the literature for years. “Total pain” includes physical pain but also involves spiritual or existential pain and psychological burdens. So there’s more to palliative care than pain control, and there’s more to pain than just its intensity.

You can control about 90% of the pain in people with cancer.

In the clear majority — in most cases of, say, cancer-related pain — the figure that people quote is from studies applying a very simple three-step ladder that was developed by the World Health Organization: You can control about 90% of the pain in people with cancer. Now, i’m blending together different cancers, different stages and resting pain versus movement pain. But if you were to say: ‘Can you control most people’s pain with simple, non-invasive measures,’ the answer is yes. That’s been studied.

As for people who have more difficult pain problems despite moving up the medication ladder, by providing a suitable nerve block or infusion, you can probably control the majority of the remainder. So the instances in which you have to choose between the patient’s being awake but in intolerable pain or being deliberately sedated to the point of unresponsiveness are very few. If you talk to people who work in hospice or palliative care, terminal sedation is uncommon.

So the choices are really not as black and white as they appear, between inadequate medication and physician-assisted suicide. There’s an enormous amount of gradation, and here in Massachusetts, where there’s a high level of medical practice in palliative care, the actual number of such cases is really very small. I think this debate is serving as a lightning rod for other issues, feelings, emotions, theology. As with any issue that becomes politicized, there’s a lot more to this than just black and white.

If you talk to people who work in hospice or palliative care, they will say that the vast majority of the time, by providing evidence-based, compassionate care, a proper death is achieved.”

Dr. Carr shared this anecdote:

“I once saw a young man in his forties with widely metastatic prostate cancer, and in excruciating pain. He had been started on a morphine infusion for this pain, but occasionally — and this is paradoxical but very well described — people who are on high doses of morphine or other opioids actually become more sensitive to pain.

So I placed an epidural in him, and gave him a little bit of local anesthesia as a non-opioid approach to reduce his pain. We were able to taper his morphine dose from an extremely high level to a moderate level. After this lowering of his morphine dose, his pain receded. He then said,    “You know that ‘Do Not Resuscitate’ order in my chart? Could you cancel that order? My quality of life is much better now, and I actually would like to continue living.’

There are a million anecdotes like this. The point is that many factors bear upon the decision to seek physician-assisted suicide. My concern is that by jumping from an unpleasant, distressing situation whose careful analysis and resolution is the practice of good medicine to physician-assisted suicide, we encourage a superficial approach.

It’s wrong to oversimplify this. That’s why, as a program, although we have superb faculty who teach classes about end-of-life and palliative care issues, we’re not saying yes or no on Question 2. I would say hypothetically, there may be an instance, exceedingly rare, where physician-assisted suicide is warranted. But in practice, in those infrequent instances where pain is hard to control, we now already can offer terminal sedation, where someone can be brought to a restful, sleep-like state by using medications. But even that is uncommon.

Preparing a living will and designating a health proxy before illness strikes or becomes advanced, promotes each person’s working through these issues in a thoughtful, unrushed way.

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  • SteffieB

    I appreciate the thoughtful article here, but I would like to, as a nurse, disagree with injecting “Do Not Resuscitate” conversation into a discussion about assisted death. This singular paragraph, I feel, serves to confuse people about what a DNR/DNI is — it’s about a natural death and allowing a natural death without a potentially violent resuscitation (chest compressions) or being kept alive on a respirator. A DNR/DNI order does not mean that treatment stops; it simply means one refuses to prolong the inevitable if one’s body decides it is ready to go.

  • CircusMcGurkus

    Isn’t ALL of this information for the patient to decide and not other people whether medical professional or family member, but the person who is actually dying? The point of the ballot initiative is to increase options and that physician assisted suicide is one option (regular old suicide is another but patients legitimately fear being revitalized after an attempt). I get that there may be hours or days or weeks or months that some people desperately want but others do not. There was another piece where the physician wrote that doctors are more powerful than patients. But, this should NEVER be the case, no matter how healthy or ill a person is. Whose life is it, anyway?

    It is not about the horror stories, it is about choice and who makes it.

  • R H

    Thank you for the thoughtful article.

    The people who support Question 2 are bringing up anecdotal evidence in almost every statement. Here’s some of my own:

    When my father was dying from a terminal illness, he was in great pain. A relative, who was an RN, checked into it and found his doctor had virtually no experience in pain management. Several days later, we found a different doctor and the last three months of my father’s life were pain-free. Personally, I think he would have gladly accepted assisted suicide pills when he was in pain . . . IF assisted suicide had been legal.