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.
Palliative Versus Hospice Care
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.
A Report from DHHS
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.
Why Oppose Such a Bill?
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.