Four columns ago, I celebrated the life of Cicely Saunders, the British doctor who inspired the modern hospice movement. In response to news of her death, I praised her for her approach to care for the dying, one that takes into account the emotional, spiritual, and familial needs of patients.
Dr. Saunders focused on relief of their pain and suffering, and taught other medical professionals around the world to do the same; this makes her, in my view, deserving of special appreciation.
Nothing in that column was untrue, so far as I can tell. However, further reading and conversation with professionals involved with hospice has revealed the current situation in this country to be more complicated than I realized.
For example, in the New York Times Magazine of August 7th, contributing writer Robin Marantz Henig asserts that the hospice movement has abandoned much of its original approach. Instead, it has conformed to Americans’ desire to keep living at almost all costs, including the acceptance of medical interventions formerly seen as incompatible with the ideals of hospice.
According to Henig, hospice “began in the 1960s as an antiestablishment, largely volunteer movement, advocating a gentle death as an alternative to the medicalized death many people had come to dread.” But now hospice practices what it calls “open access,” meaning that “terminally ill patients can continue chemotherapy and other treatments and still get hospice benefits through Medicare.”
My longtime friend Art Mazer also sees hospice as having disappointed its original vision. He took part in planning the first hospice in the United States, which opened in New Haven in 1974, and he tells of the struggle to keep the emphasis on home care, rather than institutional services. From the beginning there were pressures to bring dying patients into a newly-built care facility rather than caring for them in their homes. “All this was a distortion in the original plan,” Mazer says.
The hospice pioneers in this country also wanted to educate mainstream doctors about taking care of pain, but that did not happen. Instead, hospice seemed to settle for what my friend calls “its own little niche” in the American medical system.
Part of hospice’s loss of momentum might be attributed to the rise of the palliative care movement. However, Janet Abrahm, a pioneering Boston physician who is involved in both palliative medicine and hospice care defends hospice’s current approach. “I don’t think the hospice programs are giving up their focus,” Dr. Abrahm says. “Hospices are trying to expand to people who say ‘What’s wrong with taking oral chemotherapy to prolong life?’” “Nationally, Americans don’t want to die,” she adds.
Of one of hospice’s achievements she observes: “I’ve seen that magical work of bringing families together.”
I have also talked with Dr. Rosemary Ryan, a medical director of hospice programs in the Boston area for over 25 years. She rejects the criticism of hospice for using medical means to help patients. According to her, Cicely Saunders wanted to use whatever would help care for the dying.
It is hard, Dr. Ryan says, to make sweeping rules for those approaching death. What makes a good death varies from person to person, and family to family. “Hospice has adapted to where our population is,” she believes.
If transfusions make people feel better, then hospice can accept them. So, too hospice will take patients who have not given “do not resuscitate” instructions. As for calling 911 when a terminally ill person needs help, it is something hospice does not encourage but does not try to stop.
Dr. Ryan also sees the palliative care movement as not being in conflict with hospice. In fact, she considers hospice as part of palliative care.
As so frequently with complicated issues, I stand somewhere in the middle. I regret that hospice has made what seem to me compromises with the American refusal to face up to death. It was the special genius of hospice to treat dying people, not by fighting off death but by helping them die as peacefully as possible.
On the other hand, I welcome hospice’s collaboration with the palliative care movement and the latter’s commitment to relieving pain.
However, as Dr. Abrahm points out with regret, many American hospitals and cancer centers lack fully developed palliative care programs. Palliative care has not yet received recognition as a medical specialty, has relatively few doctor practitioners, and is established in only about one-half of America’s hospitals.
In all of this discussion, the most important fact is that altogether too many dying people go without their pain and suffering being relieved. This is an intolerable situation. It calls out for remedy through various approaches, with hospice and palliative care leading the way.
Richard Griffin