by Charlene Thurston, RN, ANP, Hospice Director, from the Fall 1996 Hospice Currents Newsletter
In its upcoming session, the U.S. Supreme Court has agreed to consider appeals regarding the decisions of two lower courts on the issue of physician-assisted suicide for the terminally ill. In landmark decisions made in the spring of this year, Federal Circuit Courts in Washington and New York struck down sections of state laws prohibiting physicians from aiding terminally ill patients in ending their lives. Preceding these decisions proponents of physicians-assisted suicide initiated measures in several states to seek its legalization, naming them “Death With Dignity Acts” or “Right to Die Acts.”
While it will be up to the court to decide on this aspect of the great debate, hospice have strongly voiced their opinion that death with dignity for the terminally ill is attainable without resorting to physician-assisted suicide or euthanasia. In fact, death with dignity is what hospices have been helping their patients achieve since the inception of these programs over twenty years ago.
It is achieved by having a team of health care providers, skillful in relieving pain and other physical, emotional, and spiritual distress, work closely together and remain constantly available to their patients and families. It is achieved by keeping their patients and families informed about their rights and about choices available to them, thereby enabling them to remain in control of all decisions.
It is achieved by treating every patient and family member with respect, reminding them of their inherent dignity and worth, regardless of the physical or mental changes due to illness or stress.
It is a sad commentary on our health system that so many of our citizens feel the need to have physician-assisted suicide and euthanasia legalized, out of fear that, without such options, they will be allowed to linger in excruciating pain or will be required to have life prolonged by treatments that only extend life prolonged by treatments that only extend their dying, rather than offering them any quality moments. It is particularly troublesome because the knowledge for how to provide excellent end-of-life care is readily available, and need only be accessed by mainstream physicians and nurses.
Fortunately, in Nantucket, physicians nurses, and other health and human service providers of hospice, the hospital, the home health department, and other community agencies are committed to working together and continually developing expertise in meeting the needs of the terminally ill patients in our community. Letters we receive and testimonials given help us feel comfortable that we are on the right track. However, no matter where you are when you are receiving your care, it’s important that understand your present legal rights, and that you advocate strongly for them, for they already provide you with a great deal of protection.
You have right to the excellent relief of pain and other distressing physical symptoms. It is already legal for doctors to medicate patients as heavily as needed to control such symptoms, even if sleep must be induced to achieve the goal. Therefore no terminally ill patient need fear death for fear of pain. If you are not made comfortable, let your physician and nurses know, and ask for further relief. If they are not successful, request a consult with hospice, palliative care specialist, or pain specialist.
You have the right to appoint someone whom you trust to serve as your Health Care Proxy or to have Durable Power of Attorney. This person will then be legally empowered to make health care decisions on your behalf, if, and only if, you are unable to do so. You should discuss with this person what your preferences would be for health care decisions. In Massachusetts, the Living Will is not legally binding, whereas in other states it is. However, it is used as a guide to help your physician understand your wishes.
You have the right to expect excellent emotional and spiritual support for yourself and your family by the hospital’s and other health care agency’s staff. All staff should provide such care, but social workers and chaplains or community clergy should always be made available to help you and your family cope with the impact of the illness, as well as to help with such matters as insurance or financial assistance. Social workers should also be available to suggest hotels, etc., for out of town family members. This is often especially important when Nantucket residents require treatment off-island.
As you read articles about experiences of patients and families who have been cared for by hospices, such as the wonderful recent article in the Boston Globe (6/23/96) and in the Nantucket Beacon (9/11/96), and, as you listen to stories of friends you might know who’ve been helped by hospices, you will hear of the richness and the value that occurred for all involved during this final stage of life. This is not a stage to be avoided. It is, after all, the final culmination of a life that has been lived and a life that’s been shared. And, although it certainly does have its pain and sadness, it also has its beauty and meaning.
Given our present rights and our current field of knowledge, death with dignity is achieved day after day hospices, without any need for tampering with the natural unfolding of life’s final hours. Like the process of birth, the process of death occurs at its own pace, with its own rhythm. In our constant desire for control, we may become frustrated with its timetable, but, it is my personal belief as a nurse who has cared for many dying patients, that the time it takes is the time that’s needed for that individual to complete his or her life and to let go. As for those of us who are family friends and caregivers, we must be careful not to allow our own needs and our own anxieties to interfere, with the sacredness of this event. It is our role to provide care, comfort, and support not interference.
There is nothing undignified about the natural process of dying. We Americans must re-examine how we think about dignity and realize that dignity is not measured by how strong ones body is, but by how strong one’s character is. Dignity transcends the limitations of the body, and often shines through most brightly at the very time the body is most fragile.
Dame Cicely Saunders, the British physician who founded the hospice movement, wrote, “You matter because you are you …. You matter to the last moment of your life, and we will do all we can not only to help you die peacefully, but also to live until you die.”