Send an urgent message to Canadian legislators urging them to stop expanding assisted suicide
(LifeSiteNews) — Active euthanasia – deliberately killing a patient – is illegal in the United States, so why do some Americans believe that hospice workers are killing, or have killed, their loved ones?
Earlier this month, I had a frank discussion with Dr. Mark Stoltenberg of Harvard University’s Massachusetts General Hospital, a palliative care doctor who opposes both euthanasia and doctor-assisted suicide. I wanted to know what palliative care in the U.S. is like but also why many Americans, most notably a Facebook group called “Murdered by Hospice” (you see, I do read the comments boxes) believe hospices deliberately end patients’ lives.
READ: How palliative care is viewed in the US through the eyes of an expert clinician
It’s not fun to ask a palliative care doctor if his colleagues murder people, but Dr. Stoltenberg was the soul of courtesy and kindness. I’m going to give you his short explanation, and then I’m going to give you his long explanation, which involves the Byzantine nature of U.S. federal medical insurance, so be warned. Grab a coffee.
Palliative care too late, hospice benefit out of date
Dr. Stoltenberg’s short explanation is that patients in the United States generally go into hospice much later than they should: often when they have only two weeks or so to live. (The ideal is six months.) A patient’s decline can be very rapid at this stage, and so families are shocked by his or her sudden change and associate it with the hospice.
Another issue is that patients stop being on one kind of Medicare insurance, which may have paid for more expensive, more effective medications, and find themselves on a different kind, which might pay for less expensive, less effective drugs.
Then there is the very thorny issue of how much the federal government insurance allocates for each patient, because the insurance system is “capitated” – that is, the government pays a hospice a certain amount per patient per day, and it is more cost-effective for a hospice, be it a community not-for-profit or a shareholders’ for-profit, to use the least expensive medications or treatments that still make sense. The non-profit wants to treat as many poor people as possible, whereas the for-profit… Well, the label’s on the tin, as we say in the U.K.
Stoltenberg’s longer explanation “gets into the weeds” of the American medical system.
In the 1980s, when Dame Cicely Saunders’ new medical discipline of palliative care came to the U.S., the federal government agreed to add a “hospice benefit” to Medicare, which is tax-funded health insurance for, typically, people over 65. However, what worked for the 1980s is apparently not fit for the 21st century.
READ: Dame Cicely Saunders began the great work of modern palliative care. Let’s continue it
“It’s great that that happened in the 80s, and it’s wonderful that, in general, most patients that are dying can get access to the hospice benefit,” Stoltenberg told me. “(But) the hospice benefit is incredibly outdated. In its current form, it’s not working very well.”
One reason it’s not working is that the amount of money allocated per patient, per day, does not take 40 years’ worth of medical breakthroughs into consideration. When it comes to paying for end-of-life treatment in 2024, one size does not fit all.
“In the 80s, when (the hospice benefit) was started, when end of life and palliative care was not drastically expensive or complicated, you could provide four or five basic medications, have a nurse visit once or twice a day, and in general provide most of what patients needed for hospice,” Stoltenberg said.
“That is not the case anymore,” he continued. “We help patients stay alive with much more complex diseases. We have patients with things like left ventricular assist devices or LVADs, which are like artificial hearts. We have a lot of patients on incredibly complex interventions who might only have a prognosis of months to live. The way that that model was designed doesn’t fit today’s healthcare system and the way that our patients show up.”
Something else that has changed drastically since the 1980s is the growth of for-profit hospices and the related demise of charity hospices. Stoltenberg, who is passionate about serving the poor and the undocumented, was willing to give his “strong perspective” about that.
“Twenty years ago, 80% of hospices in the U.S. were community nonprofit hospices that were doing their best to care for their patients. Currently, that has dropped to around 20 to 30%,” he told me. “And now around 70% (to 80%) are large-for-profit hospice companies.”
“I personally don’t think for-profit hospices should legally exist,” he added. “Now, do I think for-profit hospices are intentionally killing or harming patients? Absolutely not. But do I think they provide the best version and the best quality of care for patients? I don’t think they do. And there’s good evidence to show that not-for-profit hospices provide higher quality care than the for-profit hospices.”
“So not only is the insurance program outdated in the way that it’s run, but also … because of the stipulations that are on it, for the for-profit component of it to grow substantially, which I think is harming patients.”
Non-profits versus for-profits
Of course, the hospice benefit’s “capitated model” incentivizes any hospice, for-profit or nonprofit, to do the least amount possible, Stoltenberg admitted, because the fewer services it provides, the more money it has left over.
“Now I’ve worked for a hospice for seven years,” he told me. “I think they do a wonderful job. That’s a large not-for-profit hospice. They do their best to care for their patients, but if they can get by, by providing this medication that’s a little cheaper than this other medication, it means there (are) that many more charity patients who (don’t) have insurance that they (can) take on for free. It also means they can provide things that aren’t typically covered like a massage therapist, like a heart therapist, like a pet therapist. So they (try) to be thoughtful with their expenses and their resources so they (can) provide better care for their patients and continue to grow.”
This non-profit is still a business, but, as Stoltenberg put it, “they’re not paying any shareholders at the end of the year.”
“All the extra money goes back into the system to keep improving care for patients,” he continued. “There were challenging decisions sometimes, but I don’t think unethical. It’s just a balance of ‘How do I provide the best care I can with this set amount of funds because the government is only going to pay me this amount?’”
This is quite a contrast to for-profit hospices, the doctor believes. There “the incentive is (that) at the end of the month, or at the end of the year, any excess you have gets paid out to shareholders,” he said.
“And those shareholders want leaders in place who give them the best return on their investment. So there is incentive to not reinvest to provide the best care for patients, but to pull out as much profit as possible and pay the shareholders.”
“I think that is fundamentally against what it means to care for patients at the end-of life, and why I don’t think it’s ethical to allow for-profit hospices to exist,” he concluded.
The proliferation of for-profit hospices has led to the demise of many not-for-profit hospices, too, in part because the for-profits apparently scoop up the majority of the patients for whom the government pays out most, typically ones in nursing homes, or with dementia, who could potentially live for many months, thus providing hospices with a stable income stream. This is essential to keep any hospice open, and “many, many, many” of the not-for-profits have now closed.
It seems, then, that nobody in the hospice sector has a financial interest in killing patients: the longer they live in hospice, the more the government pays the hospice. Dr. Stoltenberg can imagine someone having a “terrible experience” at a “very bad for-profit hospice that is trying to do the least amount possible,” but he has never heard of, or witnessed, anyone’s life being deliberately shortened by palliative care workers. He said he would be “quite surprised” to hear that it really has happened.
Too much painkiller?
However, I have read many accounts of people who think that their loved ones have died because they were given painkiller overdoses, so I asked the doctor about that specifically. He told me that this is a conversation he has at least once a week, emerging when stoic patients insist that they are fine.
“You can imagine a grandmother who’s quite strong and quite stoic but has been in pain for a very long time from a metastatic cancer, and (her) daughter who is really struggling with the fact that the family member is dying,” the doctor said.
“And you can imagine when the nurse comes in, the patient saying, ‘No, I’m OK. I’m OK,’ as they’re grimacing in pain. And the daughter desperately not wanting to do anything that could potentially make (her mother) more sleepy or make (her) die more quickly,” he continued.
“Of course, no one wants to hasten their death. And because we have experience and we know that pain is not necessary, we can make it better and (make it possible) to enjoy the time that (they) have (left). We will often do our best to encourage patients and their family members to at least try different medications. If (the patients) get sick, we’ll switch to something else. But we don’t want patients to suffer from things that are treatable.”
Stoltenberg said that when patients refuse to take analgesics when he knows that he has one that isn’t going to make them too sleepy to enjoy family visits, he goes home “still stressing” because he knows they’re going to spend “the whole night not sleeping because they’re in pain.”
The doctor’s solution is to encourage, educate, and support patients in trying the medications that will best help them. This is “a huge part” of what good hospice nurses do, he said.
How to fix the system
To return to the issue of the hospice benefit, Dr. Stoltenberg dislikes that patients can’t stay on their old Medicare insurance and receive the hospice benefit on top. Sadly, it appears that the Reagan administration, which many of us view with nostalgia, is to blame for this.
“The people that founded the hospice benefit in the U.S. wanted you to be able to stay on your regular insurance and add the hospice benefit. But the Treasury Secretary for Ronald Reagan said ‘No.’ ‘No, they can’t have their cake and eat it too’ was the quote,” the doctor told me.
“And so I think that was a seed of a huge problem with our insurance system now,” he continued. “It should have been concurrent care, where you could have been on hospice but still continue any intervention that is medically appropriate, continue with your oncologist, get chemo if you want it. But, ultimately, the way that they wrote the insurance plan, because of the people who were putting it into place at the time, you had to pick one or the other, which clinically that doesn’t make any sense. And that’s part of why we have so many problems.”
READ: The dying deserve high-quality palliative care, not assisted suicide
Convincing your political representatives to implement concurrent care, then, would probably improve the end-of-life experience for millions of Americans. Meanwhile, another way to improve it would be for family members to have frequent and frank conversations about what it is that they want from palliative care. After all, we are all going to die – and this really should not be a surprise to anyone who says the Rosary – or even a single Hail Mary – daily because in it we ask Our Lady to pray for us now and at the hour of our death.
We can’t know for sure what that hour is going to be like, but we can at least share with our loved ones what we hope it will be. And that will be the subject of my next article in this weekly series on palliative care.
Send an urgent message to Canadian legislators urging them to stop expanding assisted suicide
