I recently heard the family member of an elderly woman make the comment that they didn’t want hospice involved in the care of their mother because they are about life, not death. And last month this paper published a letter to the editor in which Edmond Day referred to hospice as “the flip side of the ‘death panel’ coin” and “ ‘day care’ for the elderly and terminally ill.”
How did such misinformation about hospice manage to enter current society’s mentality?
First of all, hospice has nothing whatsoever to do with “death panels” or “day care,” as Day contends. In order for a patient to be home and on hospice, the family must have the ability to either provide the necessary day-to-day personal care or the means to hire someone, not connected with hospice, to provide it.
Hospice provides medical and technical support and education to family caregivers, helping them to provide the best possible care for their dying loved one. If the patient does not have family or if family is incapable of caring for them for some reason, they will be either in a hospital, nursing home or hospice home, where staff of that facility provides the day-to-day care.
One of the most important aspects of hospice care is the emotional support that it provides, not only for the person who is ill, but also for surrounding family members. Hospice does not tell people, “You are going to die.” Hospice is only called in with the patient and family’s permission, and when the physicians and medical personnel who have been treating the person come to the realization that there is nothing further that they can do. It is the person’s own physician who breaks the news to them that there is nothing more to be done.
Most physicians enter the profession because they want to help people, and few, if any, would simply blurt out to one of their patients, “You are going to die.” Giving that news is often painful for the physician just as it is for the family to which s/he is breaking it. Seldom, if ever, do they gloat or achieve a “natural high” from sharing bad news with their patients, as Mr. Day suggested.
My mother was diagnosed with breast cancer in 1955 and died from the disease in 1958 at the age of 33. In the 1950s, the “C word” was never spoken out loud. A diagnosis of cancer was almost always a death sentence; treatments were primitive and not terribly effective. Patients were routinely shielded from the knowledge of their own condition by both medical staff and families.
Those around them thought they were protecting the patient by not taking away their hope — in essence, pretending that the person would make a full recovery to physical health. My father went through his own life, until he died almost 30 years later, with great pride in the fact that for three years he had never let on to my mother that she had cancer. He — and his children — suffered much as a result of this mode of operation, but our family was not unique. This was accepted medical practice in 1958.
During the 1960s, a British physician, Dr. Cicely Saunders, inspired by a dying patient’s request for words of comfort, established the first hospice in London. She had been working with dying patients since the 1940s.
At about the same time, Dr. Elizabeth Kubler-Ross was addressing the emotional aspects of dying in the United States. She interviewed hundreds of terminally ill patients of all ages, including children, and in 1969 published her groundbreaking book, “On Death and Dying.”
People who study death, dying and bereavement today, in 2011, now recognize some problems with Kubler-Ross’ well-known five stages of grief, but this in no way makes her book any less groundbreaking. One thing we learned from Dr. Kubler-Ross cannot be debunked even today: It is a fact that people do know when they are dying, whether or not someone tells them.
And in most cases, they want to talk about it.
They often avoid doing so in an effort to protect family members, just as family members avoid it in order to protect the patient. This approach is terribly misguided. Trying to pretend that death can be held at bay, when this is clearly not the case, exhausts both parties and accentuates physical and emotional pain all the way around.
It also deprives families of the opportunity to share the experience in a way that enables the person to die with a sense of dignity and peace and enables survivors to come to grips with the loss, incorporate it into their identity, and to move forward with their own lives in an emotionally healthy way.
The purpose of hospice is life — not death — life lived to the fullest until it reaches its natural end. Its purpose is not to bring about or to hasten death. Active euthanasia is directly against the hospice philosophy.
Even the Roman Catholic Church, one of the most ardent supporters of pro-life principles and a community that considers euthanasia a grave evil, is not against hospice as a way of aiding people and their families through the final journey from this life to the next. The Catechism of the Catholic Church in Article 2279 states, “ . . . The use of painkillers to alleviate the sufferings of the dying, even at the risk of shortening their days, can be morally in conformity with human dignity if death is not willed as either an end or a means, but only foreseen and tolerated as inevitable. Palliative care is a special form of disinterested charity. As such it should be encouraged.”
You are going to die. I am going to die. Every creature who has ever walked the Earth, walks it now, or will walk it in the future is going to die. Death is an inevitable reality of the human condition.
We cannot avoid it.
Whatever we can do to help individuals and families muster their emotional and spiritual strength for the journey through death to whatever they believe is on the other side of death is well worth the effort.
How I wish hospice had existed in 1958!
Angela Maiuri Marczewski, a licensed mental health counselor and a hospital chaplain, lives in Schenectady. The Gazette encourages readers to submit material on local issues for the Sunday Opinion section.