The Hospice Care Team
Remember that scraped knee when you were six or that bully who made you cry in the first grade?
You were lucky if you had someone to run home to, someone whom you could rely on to give you a hug and make it all better. As we go through life we all need people on whom we can rely. Whether parents, relatives, spouses or friends, having someone there — someone who cares — makes it possible to get through the tough times. The hospice care team is there 24/7 for patients and their families to rely on — with physical care, emotional support and every other kind of help that is needed. That kind of support can be powerful medicine. A study commissioned by the National Hospice and Palliative Care Organization, published in the Journal of Pain and Symptom Management in September 2004, showed that because they are surrounded by people who care about them, hospice patients, on average, live longer than those with the same diagnosis who do not elect hospice care. The hospice care team is composed of a doctor, nurses, home health aides, a social worker, a spiritual care coordinator, a bereavement coordinator and volunteers. Members of the care team visit the patient and family as needed, are inconstant contact with one another, and collaborate at weekly meetings to incorporate their own insight and perspective on the needs of both patient and family. Individuals at the end of their lives require not just physical care; often there is greater need for psychosocial, bereavement or spiritual care. The team helps both patients and families understand the dying process and what to anticipate physically and emotionally. The unknown is often more frightening than reality. Information from the hospice team goes a long way to relieve anxiety at this most stressful time.
The Patient’s Attending Physician
The attending physician and the hospice medical director head the hospice care team. The patient’s own doctor is an important member and is usually consulted and included in all decisions. Patients often have close ties to their physicians, and those ties remain throughout the hospice program. The attending physician is the first to certify that the patient is ready for hospice care. “I’m a huge fan of hospice,” says Dr. Nicholas Gemma, an oncologist with Shenandoah Oncology in Winchester, Va. He encourages his patients to enter hospice when they have opted to end ineffective life-prolonging chemotherapy or radiation. “I talk about hospice as an extension of my office practice — the hospice nurses are my eyes and ears inside the patient’s home, and that improves my ability to make more intelligent decisions. The nurses can anticipate frequent and unpredictable changes in pain control and quality of life far more frequently than we can try to manage with return visits to the office.” Often Dr. Gemma has the family in mind when recommending hospice. “I suggest hospice when I see that the family or caregiver is really struggling with the uncertainty, unpredictability and inevitability of the disease. Entering hospice gives them structure around the situation at home and the feeling that there is a safety net there. They don’t have to feel they are out at sea without an anchor. I would say half the time I recommend hospice is to ease the burden and facilitate the caregiver.”
“The hospice care team works together to explore and address these needs with the patient and also with the caregivers.”
The Hospice Medical Director
The collaboration between the primary care doctor and the hospice medical director is a shift in treatment from aggressive care that attacks the disease to palliative care, which means soothing the symptoms of the disease and keeping the patient comfortable without trying to cure. “As medical director, I am an integral part of the care team in which all are equal players in the holistic care of our patients,” says Jennifer Lowe Ellis, MD, medical director for AseraCare Hospice in Clarksville, Tenn. “We address not only our patients’ physical and medical needs, but also their emotional, spiritual and social needs.” The medical director consults with the attending physician, certifies that the patient qualifies for hospice care and regularly meets with the hospice team. “We call on the expertise of our nurses, CNAs, social workers, chaplains and physicians,” says Dr. Ellis. “It is the beauty of this teamwork that makes hospice work so well.” The hospice medical director has oversight for the care plan that is developed for the patient, and monitors changes in the patient’s condition and advises as care needs change. Dr. Ellis describes her role: “Prior to my work in hospice, I felt particularly frustrated when I encountered families struggling with suffering at the end of life — those who were very elderly and chronically ill in hospitals and nursing homes. I realized that at the end of life, pain and suffering (physical, social, mental and emotional) are often magnified when the medical profession attempts to increase the amount of time a person lives rather than focus on the quality of life a person experiences in his or her final months.” Dr. Ellis found a home as a medical director in hospice because of her interest in physical, social, mental and emotional quality-of-life issues. “We need the opportunity to nurture the values of forgiveness, love, hope and gratitude,” says Dr. Ellis. “The hospice care team works together to explore and address these needs with the patient and also with the caregivers, be they family, loved ones or facility staff.”
“It is a privilege for me, when I am able to do so, to make home visits and experience the environment in which the patient lives,” Dr. Ellis adds. “This not only enables me to care better for the patient and family, but also in many cases teaches me valuable and important lessons about the journey of life and death.” The ability of the hospice medical director to step in and help patients directly can greatly relieve suffering, particularly if the attending physician is unavailable or unwilling to become involved. Carol, a patient care coordinator for AseraCare, tells this story of Dr. Rickson, a medical director who took charge of a patient who desperately needed care.
“Marie’s husband called and said he needed help. I visited and met his wife. She was so thin and malnourished, probably weighed 50 pounds at the most, and she hadn’t been out of bed for three weeks. In order to admit her into hospice, we needed to have a doctor’s order, so I called her doctor. He hadn’t seen her for almost a year and told me he couldn’t sign the order for hospice unless she came into the office for evaluation or we called 911 to have her taken by ambulance to the hospital. Unfortunately, Marie was not physically able to go anywhere; she was too fragile to even turn over in the bed. “When a patient has no attending physician or the doctor doesn’t want to sign the order, we offer our medical director as the primary physician. Our medical director, Dr. Rickson, gave the order and said she wanted to go to the home and evaluate Marie in person. “Dr. Rickson spent an hour talking with Marie and her husband about dying, and their feelings, and whether they wanted further treatment and what the options were. They chose hospice care, but the biggest concern was the pain Marie had in her arm. She couldn’t tolerate touch or movement, and Dr. Rickson determined that it might be broken. She not only assessed Marie’s physical pain, but was able to relieve it. “Because Marie and her husband said they didn’t have a church affiliation, Dr. Rickson talked with them a little bit about religion. She asked their permission to say a prayer, and they were receptive. And she was able to talk with them about what was to come. Not often do you see a doctor show that much empathy and compassion. I was very moved. “Without hospice, Marie’s husband would have had no choice but to call 911, and it would have been extremely painful and traumatic for Marie to be put into an ambulance. “Marie was only with us for a few days, but we were able to give her extra TLC and relieve her pain. Her husband was free to be the husband instead of the caretaker. Without Dr. Rickson’s intervention, Marie would have suffered needlessly.”