People in our society remain profoundly uncomfortable with the dying process and even with discussing the needs of the dying. With our aging population, more and more people are confronting this challenge for themselves or their parents.
Hospice is care that is provided during the last few months of a person’s life. People frequently think of hospice as a place. While hospice care may be provided in an in-patient facility or nursing home, hospice care can be provided in the home as well. The hospice philosophy includes treating physical, emotional and spiritual symptoms. It extends to the emotional and spiritual concerns of the family as well. This unique approach to the family as the unit of care enables those closest to the patient to be included in treatment issues.
Hospice is for people whose doctors have determined that they have six months or fewer to live. There are a myriad of diagnoses that may qualify someone for hospice care. Those include but are not limited to cancer, Alzheimer’s, cardiac and ALS (Lou Gehrig’s disease.) When doctors determine that there is no longer a viable cure for these conditions, it is appropriate to refer that patient for hospice care. Hospice services are most frequently covered by Medicare or other insurance.
The treatment focuses on palliative care of physical symptoms and helping the patient and family to identify their goals for the last days of the patient’s life. Hospice professionals are uniquely qualified to provide end of life care related to terminal diagnoses. The hospice team includes a doctor who serves as the medical director. This doctor oversees and coordinates the care, but the patient’s personal doctor continues to make decisions for the patient.
In addition, the team includes hospice nurses, social workers, aides, spiritual counselors and volunteers. Once a patient’s physical symptoms are controlled, they often turn their attention to emotional and family issues, which may be causing distress.
Hospice aides provide personal care for the patient, which is a great help to families. Any equipment, like hospital beds or oxygen and medications, is covered by the hospice benefit. Volunteers often spend time with patients so that the family members can tend to other obligations or get some much-needed rest. Hospice services continue for the family after the patient dies. Bereavement services continue for over a year after the patient dies to help the family to deal with their grief.
I often say that hospice patients and their families are in the midst of one the biggest crises of their lives, especially when caring for a patient at home. Family and friends frequently avoid dealing with what is happening. They stop visiting or calling. Patients and families feel isolated and ignored. In fact, it is probably fear that keeps people away. The attitude and support of the hospice team is priceless during such a time.
The most significant contribution that we can add to the hospice patient is our willingness to be where they are, to enter into their lives without judgment. In this way, we can help to enhance the quality of their lives using their definition of quality rather than our own. One of our first questions for a patient and family is to ask what their goals are. For some patients, that means simply allowing them to remain in bed rather than forcing them to get up and move. For others, the ability to sit quietly, in silent companionship, provides a measure of peaceful composure at a time when people around them are filled with anxiety.
Other patients have specific goals for certain activities or for reaching out to family or friends for significant conversations. The hospice team can facilitate these activities and conversations so that the patient achieves some measure of control and comfort. A recent hospice patient of mine was determined to get to the opera. Since she needs oxygen and does not live close to an opera house, her daughter was able to find a live broadcast of the Metropolitan Opera at a local movie theater. The hospice team coordinated equipment and medication to enable this patient to attend the opera in comfort.
A recent hospice patient that I worked with was a man in his 60s who had been estranged from his children. There was a long history of dysfunctional behavior in this family. When the children heard that their father was terminally ill, they wanted to reconnect. The patient was less certain, but he was willing to try. As the hospice social worker, I was able to facilitate a meeting for this family, which enabled them to spend a few hours sharing good memories and telling stories. This meeting certainly did not heal all of the wounds of the past 35 years, but it did assist the patient and his children with feeling more settled. The patient died two days after that visit. His children felt great relief that they had been able to have that time with their dad before he died.
So often, hospice families will mention simple acts of empathy as the thing that allowed them to survive this very difficult time. The hospice team becomes an integral part of the family for whatever period of time the patient is on the program. The willingness of the hospice team to share this profound experience with a dying patient and their family enables them to provide this gift at the end of life.
Janet Hayden is Director of Social Work at Greenwood House Hospice in Ewing, NJ.