When my mother was dying of Alzheimer’s disease and the sharp bodily decline that hits those in their late 90s, my wife and I brought her home for care. We consulted closely with her doctors, who referred her to a palliative-care center, where she was prescribed a continually changing regimen of interventions to relieve her intensifying discomfort and alarming mental-health symptoms.
The palliative team helped Mom tremendously. It not only prescribed pain control but also anti-psychotics to fight the various assaults mounted by her worsening Alzheimer’s. For example, before receiving palliative interventions, Mom had started suffering from terrible night terrors, which necessitated our decision to bring her home. After she received palliative interventions, the terrors subsided substantially, and when other disturbing mental-health symptoms appeared, the team was very responsive in meeting those challenges, too. I could not have been more satisfied with the care my mother received at the hands of these compassionate medical professionals.
After a few months, as my mother continued to decline, she was deemed to be dying and prescribed hospice care. Palliative care and hospice care are not the same thing. Palliative interventions broadly describe symptom alleviation across the medical spectrum, while hospice focuses narrowly on caring for the dying and generally provides greater services, such as chaplaincy, social work, and in-home volunteers.
I was all for it. My father had died peacefully in hospice from cancer back in 1984. Now that mom’s time was clearly coming, I wanted her to be kept as comfortable and engaged in life as possible. And indeed, that is what happened. She was assigned her own on-call hospice-certified nurse practitioner who came weekly to check her condition and make any care adjustments required. Hospice nurses were also on call at all times in the event of a palliative emergency. A home health-care worker visited regularly to bathe her and anoint her thin and delicate skin with emollient creams. She was provided with a hospital bed that undulated to prevent bed sores. She was prescribed liquid morphine in case she needed it, and I was carefully instructed on the proper doses to relieve pain without causing respiratory failure or other unwanted side effects. When mom died, the hospice nurse came to our home at 3 a.m. to make the medical call. Again, I could not have been more satisfied with the care given to my precious mother — and to me.
Alas, everyone requiring palliative and hospice care does not necessarily have the same positive experience as my family. Indeed, a recent report published by the Department of Health and Human Services found significant deficiencies in hospice programs that could prevent other patients from attaining the high level of care my mother received:
The most common types of deficiencies involve poor care planning, mismanagement of aide services, and inadequate assessments of beneficiaries. In addition to these, hospices had other deficiencies that also posed risks to beneficiaries. These failings—such as improperly vetting staff and inadequate quality control—can jeopardize beneficiaries’ safety and lead to poor care. Further, one-third of all hospices that provided care to Medicare beneficiaries had complaints filed against them.
The report offers many curatives, the details of which are too arcane and lengthy to get into here. But there is already a bill before the Congress that could alleviate at least some of the problems it identifies. The Palliative Care and Hospice Education and Training Act (S. 2080) would allow the government to fund centers for, among other things, improving “interprofessional team training of health professionals in palliative care,” developing and disseminating “interprofessional team-based curricula,” supporting “training and retraining of faculty,” and establishing “traineeships for individuals who are preparing for advanced education nursing degrees, social work degrees, or advanced degrees.” It would also fund improved training in the palliative arts at medical schools. The ultimate goal would be improving the delivery of palliative and hospice services in hospitals, care centers, and the home.
Unfortunately, the bill is opposed by some opponents of assisted suicide, people who are my friends and whom I respect for their commitment to defending the practice of ethical medicine. This makes no sense to me. The more confidence people have that their loved ones will be cared for properly through palliative and hospice techniques — as my mother was — the less they are likely to turn in desperation to support for assisted suicide. Indeed, euthanasia advocates engage in ubiquitous fearmongering to convince people that their binary choice is allowing assisted suicide or abandoning their loved ones to a potentially agonizing death. In this sense, public support for legalizing assisted suicide can be interpreted as a declaration of no confidence in the ability of doctors to properly care for people.
The better the delivery of palliative and hospice care, the less the public is likely to support assisted suicide. So why oppose a bill that would seem to be wholly benign and has the potential to ease the assisted-suicide fever? A few euthanasia opponents misperceive hospice as a cover for assisted suicide — a canard that I reject out of hand. But most who reject S. 2080 do not oppose hospice as a matter of principle; they’re worried that the funds appropriated by the bill could be misdirected into educating medical professionals on euthanasia techniques.
I have no doubt that assisted-suicide boosters would be pleased if that turned out to be the case. But it would not be up to them. After researching this concern, I am confident that the bill neither intends — nor inadvertently permits — any such thing.
Part of the confusion may be the Byzantine nature of federal legislation. Rather than lay out all terms clearly for ease of understanding, federal bills refer to existing federal statutes, requiring those who want to understand what a bill really would do to access a law library. So, let me explain clearly why this bill would not permit training for assisted suicide or any other means of causing death. Section 5 reads:
Clarification: None of the funds made available under this Act (or an amendment made by this Act) may be used to provide, promote, or provide training with regard to any item or service for which Federal funding is unavailable under section 3 of Public Law 105-12 (42 U.S. C. 14402). [Emphasis added.]
Well then, you might ask: What terms of Public Law 105-12 — signed by President Bill Clinton in the wake of Oregon’s decision to legalize euthanasia — are relevant to the question at hand? Let’s examine the law:
a) . . . no funds appropriated by Congress for the purpose of paying (directly or indirectly) for the provision of health care services may be used —
(1) to provide any health care item or service furnished for the purpose of causing, or for the purpose of assisting in causing, the death of any individual, such as by assisted suicide, euthanasia, or mercy killing;
(2) to pay (directly, through payment of Federal financial participation or other matching payment, or otherwise) for such an item or service, including payment of expenses relating to such an item or service…
(3) to pay (in whole or in part) for health benefit coverage that includes any coverage of such an item or service or of any expenses relating to such an item or service. [Emphasis added.]
Put the two texts together and you find that S. 2080 would not provide funding to train medical professionals in procedures that cause death. So far, so good. The next part is a bit tricky. Existing law makes clear that its provisions do not include circumstances involving the withdrawal of unwanted medical treatment. But the Supreme Court ruled unanimously in 1997 that withholding unwanted treatment is not the same as assisting suicide. Indeed, when that happens and death comes, the cause is the underlying condition, not an overdose of barbiturates.
Withdrawing a feeding tube is a form of ending unwanted medical treatment that can have only one outcome: death. But the law of every state deems tube feeding to be a medical treatment that people have the right to refuse. S. 2080 funds training in the provision of treatment, not in techniques for ending it.
Public Law 105-12 also excludes the “withholding or withdrawing of nutrition or hydration” from its provisions. This is less ominous than it may seem. Dying patients will sometimes cease eating and drinking as the body shuts down, which is a normal part of the process. At such times, it is medically inappropriate and potentially harmful to force sustenance on the patient, and so the bill poses no threat there.
But what about a patient’s committing suicide by self-starvation, known in euthanasia parlance as VSED (Voluntarily Stopping Eating and Drinking)? That act intentionally causes death, and hence, training to facilitate a patient in it would seem to be precluded by S. 2080. Moreover, any lingering doubts about that question — which isn’t de minimis — could be remedied readily in the regulatory process.
It should also be noted that the sponsors of the bill listened to the concerns that anti-euthanasia activists expressed about its previous iteration. To be even more explicit and to prevent any confusion, this year’s version of the bill has added a clear statement that, in the programs it funds, “palliative care and hospice shall not be furnished for the purpose of causing, or the purpose of assisting in causing, a patient’s death, for any reason.” There’s no wiggle room there.
As an anti-euthanasia activist for 26 years, I am not naïve. I know that many assisted-suicide advocates wish to corrupt hospice and palliative care by authorizing killing in their names. But their perfidy is not a reason to oppose a bill with great potential to help so many people. And besides, assisted-suicide opponents mustn’t fall prey to the temptation to always say no; we must proactively support efforts to improve the delivery and accessibility of quality palliative and end-of-life care regardless of the assisted-suicide issue.
Accordingly, I endorse S. 2080 and hope you will join me in expressing your support to your elected representatives. After all, the suffering it prevents might well be yours or that of someone you love.