(LifeSiteNews) – If there’s something Canadians dread more than death, it’s getting our heads around the American medical system. Moreover, I live in the United Kingdom, where the National Health Service (NHS) is seen as the great bulwark against American-style medicine that (we whisper) may be more up to date but (we shout) ruinously expensive.

However, having already consulted palliative care experts in Canada and the U.K. last week, I wanted to find out what palliative care is like in the United States. I began my research on Tuesday by interviewing Dr. Mark Stoltenberg, an attending physician in the Palliative Care division of Massachusetts General Hospital, the original teaching hospital of Harvard Medical School.

Our conversation was so long and interesting that I’ll have to present it in two separate articles. In this one, I’ll be talking about access to palliative care in the U.S., attitudes toward physician-assisted death there, and American patients’ attitudes toward their own palliative care.

Who gets palliative care?

Dr. Stoltenberg began his extensive post-secondary education at Duke, where he studied religion. While working on his first medical degree at Loyola University in Chicago, he studied for a Master’s in bioethics and public health policy. It’s not surprising then that one of Stoltenberg’s principal concerns is for the vast numbers of impoverished people in the U.S. who do not get good medical treatment, let alone palliative care, at all.

The doctor told me that a patient’s access to health care — and therefore palliative care — can depend very much on the state in which he or she resides. In Massachusetts, he believes, 99% of residents have access to health care, whereas in Texas, 30% of the population has no health insurance.

I was surprised to hear that that there are at least two government insurance programs: Medicare, which covers only people over 65, and Medicaid, which changes from state to state. In some states, Stoltenberg told me, you can’t have Medicaid unless you work, but those who don’t work are among the people who need it most.

“And also there are some states that don’t offer any Medicaid support for people who are not U.S. citizens, whereas in Massachusetts we at least have limited programs (for undocumented residents),” Stoltenberg added.

Active euthanasia is still illegal, but medically assisted suicide exists

When I asked the doctor about the difference between palliative care in the U.S. and the euthanasia regime in Canada, he underscored that, although he is “worried and concerned” about the situation north of the border, particularly regarding the government’s pressure on institutions, including Catholic hospitals, to offer so-called medical assistance in dying (MAiD), there are many Canadian palliative care providers against it.

“I know plenty of individual clinicians who are personally against providing it,” he said. “They have never provided it and are practicing palliative care. They’re not being forced to do it.”

Meanwhile, “10 or 11” U.S. states already have their own form of MAiD, which Stoltenberg referred to as “Physician Aid in Dying.” (PAiD?) In this situation, a physician writes a prescription for a lethal medication, the patient fills it at a pharmacy, and “they take it typically at home on their own time.” The doctor isn’t usually there when they do.

So far so bad, but is this considered a form of palliative care?

“It would depend on who you ask,” Stoltenberg told me. “I personally don’t think it is.”

“I am personally not supportive of it,” he added. “I don’t plan to ever participate in it. I am against it morally and personally.”

At the same time, he acknowledges that he has (“very compassionate, excellent”) colleagues who do agree with it.

“I want to be clear that this is something we need to be able to talk about together and recognize that people of goodwill, caring for their patients, might come to different conclusions on this,” he said. “And it’s really important to have that discussion.”

The realities and the myths

Interestingly, the American Academy of Hospice and Palliative Medicine maintains a “studied neutrality” on the issue; its membership is split. However, there is evidence that of all the medical specialties in the U.S., the specialists most against euthanasia are palliative care doctors and clinicians. Stoltenberg believes this is because palliative care providers can best separate “the realities and the myths.”

“Many non-clinicians think the reason the patients want it or ultimately need (medical assistance in dying) is because of uncontrolled symptoms, because of severe pain or other symptoms,” he continued. “And I think palliative care specialists are the ones that know best that that is not true. And we also know that the data backs that up.”

Apparently, the vast majority of people who request physician aid in dying are not motivated by pain but of being dependent on others and losing their autonomy.

Meanwhile, Stoltenberg says that palliative care providers know that “most symptoms as a part of the dying process can be managed, often with pretty basic intervention. We sometimes need more complex interventions, or higher doses of medication, but the vast majority of the time we can help support patients to have peaceful deaths.”

Care for everyone who suffers

At the same time, the doctor believes “there is no such thing as a good death” for a mother of three young children,” for example.

“Death is sometimes horrible … because it happens too early, or (it could have been prevented). There is no making that death good, but we support the family, the patient, and the community to minimize the suffering that’s occurring, to allow for those heartfelt and terrible goodbyes to occur.”

A key part of palliative care, the doctor emphasized, is a recognition that not just the patient but the patient’s family suffers, and so it’s the palliative care team’s responsibility “to note, observe, and care for everybody that’s involved and for everyone that suffers.”

“And I think that is especially important when working with patients in populations from under-resourced … backgrounds because the degree to which the suffering and the difficulties fall on the family is even more when it’s an under-resourced family that doesn’t have any support,” Stoltenberg added.

Who decides when a patient is dying?

One of the issues that comes up when I read critiques of palliative care in the United States is a belief that some doctors give up on their patients and move them to “comfort care” too soon. Who decides when it is time to stop fighting death and begin palliative care, I wanted to know.

Dr. Stoltenberg indicated that it was not clear.

“It’s a spectrum, and I think included in that spectrum is the wishes, the values, and the perspectives of the patient and the family,” he said. “And it is our job to listen and understand what’s important to family, what they’re willing to go through, what makes sense to them as far as quality of life, and then adjust our plans based on that.”

The doctor wanted to be more specific so that we not misunderstand what he’s saying here. He especially wants us to understand that nothing in ordinary palliative care is done to deliberately hasten death. (The exception is for those aforementioned doctors who write lethal prescriptions for the suicidal.)

In short, there are some patients who want any treatment that will help them continue to live, and there are others who feel that they are ready to die. For the patients who want to live as long as possible, “we’re a lot more aggressive and we might continue some of our interventions for much longer than we would for other patients,” Stoltenberg explained.

When it’s clear that this kind of patient is no longer very conscious, or it’s difficult to keep them out of pain without making them sleepy, or previously helpful treatments are becoming harmful, then the palliative care team has a conversation with this patient or their family about changing their care to focus on comfort.

The care path is different for patients who go into palliative care feeling that they’re at peace with dying.

“There are other patients that tell us very clearly, ‘I’m 86. I’ve had a wonderful life. If I get another infection, I don’t want to treat it. I already feel like I’m pretty weak and tired. I am ready to die,’” Stoltenberg told me.  “And so, for that patient, we likely won’t be using things like antibiotics. … As they get sicker, we focus exclusively on their comfort. Giving them doses of medication, but never more than what they need to stay comfortable.”

The doctor was adamant that palliative care workers never deliberately try to shorten the lives of their dying patients.

“We never do anything to hasten (death),” he said. “We care about them too much. We respect their dignity too much to do that.” But, for those who are ready to go, “we also do not have to get in the way when their death starts to come.”

Regarding pain medication, he said palliative care doctors “would never intend to give so much that it shortens somebody’s life.”

Meanwhile, the vast majority of his patients are somewhere between those two examples.

Now, I can already hear the objections, and I want you to know that I did ask Dr. Stoltenberg some hard questions. For example, there is a Facebook group called “Murdered By Hospice,” where there are messages from many people who believe this is exactly what happened to their loved ones. Even if their stories can’t be checked, their anger and grief is real. What’s this about? Another issue that this group discusses is disagreement among families about what treatment path is best for their loved one. I asked the doctor about that, too, and I’ll tell you what he said in my next article.

Other articles in this series include: The dying deserve high-quality palliative care, not assisted suicide; Dame Cicely Saunders began the great work of modern palliative care. Let’s continue it; and Very few people live out their last days with good palliative care. Why is that?