Most would agree that the natural process of birth has been enhanced for both moth-er and baby by modern medical advances. But just as we all need help entering this world, we need assistance leaving it. There now exists a field in modern medicine known as hospice that enhances the care of the terminally ill and assists their family members.
The process of death is different for everyone. Most people hope that when their time comes, they go easily and painlessly, by suffering a fatal heart attack or not awakening from sleep. However this is not usually how death happens. At some level there is usually pain, uncomfortable symptoms, and some element of physical and emotional suffering, both for the dying and their families.
A saying that accurately summarizes the role of the medical profession goes some-thing like this: “Cure sometimes, treat often, and relieve suffering always.” This captures the essence of the concept of hospice. At some point, we will all face the time where attempts at prolonging our lives through modern medical technology will become futile. This may be as true for a 90-year-old great-grandmother struggling with the general failure of her vital organs, as it is for a 5-year-old fighting the grasps of an inoperable brain tumor.
One of the most challenging tasks a doctor faces is arriving at the decision that there is truly nothing curative left to offer a patient with a life-threatening illness, and then perhaps even more difficult, skillfully and compassionately leading a patient and their family to the same conclusion. Often many myths must be overcome during this process. Entry into hospice care does not mean your doctor is giving up on you, but that the focus has changed to one of quality time and freedom from discomfort.
Hospice is a concept that encompasses the physical, emotional and spiritual care of the dying patient. It is a not a physical place but rather a concept...hospice care can occur anywhere, in a hospital, in a nursing home, in a hospice facility or at home. Patients under hospice care will receive skilled medical treatment to minimize pain and other symptoms such as shortness of breath, anxiety, bowel problems, fevers and many others. Hospice care involves a team of many disciplines, not only doctors and nurses, but also psychologists, social workers, dieticians, physical therapists and spiritual guides. It is individualized to the specific needs of each patient and family dynamics. Varied cultural perceptions and rituals are always respected.
Hospice is not to be confused with euthanasia. Death is the primary intent of euthanasia. The primary goal of hospice is minimizing suffering and maximizing quality of life, and allows death to occur in a natural way.
The word hospice comes from the Latin word “hospes,” meaning to host a guest or stranger. As far back as 1,500 years ago, when mortality rates were much higher and most people did not live past the age of 40, communities were structured to take in the dying and comfort them as much as possible. After all, there was not much else to offer. After World War II, when hospitals and medical science saw exponential advances and treatments, death was always seen as a failure of the system. In 1969, a revolutionary book called “On Death and Dying,” by Dr. Elisabeth Kubler-Ross was published. Based on more than 500 interviews with dying patients, it became a bestseller, but more importantly brought death out of secrecy and into public awareness for the first time.
Today the concept of hospice has been transformed into a tangible specialty whereby doctors are trained specifically to manage end-stage diseases and complications in a caring and compassionate manner.
Most people would not intuitively think of working with dying patients as rewarding, but I find it extraordinarily rewarding. My greatest satisfaction as a physician has been seeing my skills used to their most significant heights, caring with compassion and dignity for those who are dying. Almost invariably families show great gratitude for referring and facilitating their loved one’s passage through hospice.
For general information about hospice visit www.hospicefoundation.org or www.nhpco.org. There are many hospice organizations in San Diego, and from my experience they all are easy to access and use for Spanish speaking patients.
Dr. Grunvald is Associate Clinical Professor, Department of Medicine at the Perlman Internal Medicine Group, UCSD Medical Center.