Since Dame Cicely Saunders, founder of the modern hospice movement, and Elisabeth Kubler-Ross, pioneer for the rights of the dying, brought public awareness to the need for end-of-life care, hospice has helped millions of people face death with integrity and dignity.
Hospice is a philosophy that focuses on caring, not curing; on the quality of life, not extending the quantity of time one has to live. The National Hospice and Palliative Care Organization states that its “mission [is] to lead and mobilize social change for improved care at the end of life.”
Earlier this year, however, the Maine Hospice Council spent valuable resources in Augusta trying to defeat LD 1270, a bill regarding patient-directed care at the end-of-life, despite the fact that a recent Harris poll suggests 75 percent of Americans favor this choice. The bill was declared dead on June 16.
The Maine Hospice Council stated hospice has in its toolbox everything a patient needs to die free of pain. For most people, that may be true. But, it’s not true for everyone.
According to the National Hospice and Palliative Care Organization, less than half of the deaths that occur in the United States are supported by hospice. And, of those people who do use the service, most of them enter hospice and die within two weeks or less. So it’s little wonder many people equate hospice with a death sentence.
Unfortunately, when a patient is referred to hospice at the last minute, all the great services available don’t get used. There isn’t time. At that point, pain management is the major priority. Sometimes that can’t be resolved either. In order to alleviate pain and suffering, the patient is given a combination of drugs, then goes into a morphine-induced coma and ultimately dies.
This is legal and is called a “ double-effect” death. Anyone who has witnessed the struggle some patients must go through to die welcome this. Still, some patients cannot tolerate opiates. Their suffering is intense. Who would wish this kind of death on a fellow human being?
Why do most people wait until death is close to choose the hospice option? This bad timing is largely because of two factors: the inherent fear of the “H” word among patients and the timing of the hospice referral by a medical professional. Perhaps the reason for the late referrals is that physicians aren’t given enough training in medical school to have these kinds of “difficult” talks. Or perhaps it’s because there’s no “billing code” for end-of-life discussions.
Nevertheless, and in spite of all the great things hospice can do, hospice providers have been dismal failures at getting their message across. Most people are not educated about what hospice is and what it can do for terminally ill individuals and their families.
Instead of advocating against a right of choice most people want, the Maine Hospice Council should better use their resources to educate the public, and the medical community, about the benefits of hospice care. The council should step out of its adversarial stance regarding aid-in-dying and join this movement for the rights of the individual.
Compassion and Choices, a Denver-based nonprofit committed to death with dignity, states that “terminally ill patients are not as interested in accelerating death as they are in knowing that there is an option to a peaceful and humane death should all other efforts to relieve their suffering fail. Studies from over [15] years of data in Oregon reveal that as long as patients know an option of last resort exists, around 90 percent of patients initially interested in accelerating their death are willing to try alternative forms of treatment.”
The Maine Hospice Council should review its mission statement: “The Maine Hospice Council exists to ensure the continued development of hospice and palliative care in Maine. The council provides education and technical assistance regarding end-of-life care, as well as advocacy for terminally ill and bereaved persons.”
Clearly, the Maine Hospice Council needs to use its resources to really educate the populous and really advocate for the terminally ill. It’s time to practice what they preach and recognize the big social change that is underfoot. People feel it’s a patient’s right, a patient’s choice and, solely, a patient’s decision. Next time, the hospice council should support aid-in-dying and be on the right side of this important legislation.
Lynne Tobin of West Boothbay Harbor is an end-of-life educator and an advocate for patient-directed care at the end of life.