I thought I might share a little about what hospice is and my role as a hospice social worker. Hospice is a fairly new movement in the health care industry. Originating in the nineteenth century in Dublin, the Roman Catholic Sisters of Charity pledged to provide a clean, supportive environment for care for the terminally ill. In the 1960s, a British physician, Cicley Sauders founded the first modern hospice, St. Christopher’s Hospice in London, England. (Kastenbaum, 2002) The first hospice in America, the Connecticut Hospice, opened in 1974, followed shortly by several others including Yale Medical Center Inpatient Hospice and a hospice program in Marin County, California. Currently hospice is more of a philosophy or program rather than a place. The term hospice comes from the Latin word “hospis’ meaning host and guest. Hospices ran by the Catholic church in the Middle Ages were places that offered refuge to the poor and the sick as well as to travelers returning from the Crusades. The work done by Dr. Saunders in 1967 helped to establish clear differences from the early homes for the dying to a system we now call hospice care. In the United States hospice is primarily a system of care provided in the home however there are inpatient hospices throughout the United States. Currently Hospice of Humboldt is considering building a small inpatient hospice but the process is in the early stages. Hospice emphasizes palliative medicines and supportive services rather than cure oriented therapies and interventions. Hospice is dedicated to symptom and pain management allowing a terminally ill person to die peacefully surrounded by their loved ones in their own home. Today there are over 4850 hospices across the country. The National Hospice and Palliative Care Organization reports approximately 1.45 million patients received hospice care and 38.8% of all deaths in the U.S died under a hospice care program in 2009(NHCPO,2009). In order to receive hospice care a physician must determine to the best of their ability a patient has a prognosis of less than six months to live. Due to the palliative care philosophy of hospice care, the patient would not be eligible for services if they are pursuing aggressive treatments such as chemotherapy. When the patient is done with treatment and does not want to pursue additional aggressive therapies then hospice is appropriate. Hospice is paid by Medicare, Medi-Cal and private insurances and in this area Hospice of Humboldt does not refuse care if someone does not have the ability to pay. Hospice care is provided by a team. Included are the patient, the family, and the health care providers, nurses, home health aides, social workers, chaplains, and physicians. The family or friends of the patient are the primary care providers, hospice does not provide around the clock care (on a regular basis) and we do not have an inpatient hospice facility in this area. Hospice supports the patient, family and caregivers to understand the complexities of caring for a terminally ill person. The multidisciplinary them work together to educate, support and assist through the dying process. Patients can reside in their own homes, a residential care facility or in a skilled nursing facility.
The social work profession helps individuals, families and/or communities enhance or restore their capacity for psychological, emotional, spiritual, social and physical health. Because of these professional values and skills, social workers in hospice and palliative care settings are a perfect and needed addition to the multidisciplinary team. Due to the nature of this service, social workers are working within a mostly “medical model of care”. Social workers help the team to understand the complexities of looking at a patient and their family as a whole interconnected unit. Social workers are strong advocates for self-determination and culturally appropriate care. Social workers evaluate the strengths of individuals and families and understand that good medical care requires that the wishes and needs of the individuals being served are respected which can be a challenge when working in a medical model of care. Social workers within a hospice care setting assist individuals and families with psychological and spiritual stress, financial stresses, ethical dilemmas and problem solving, resource referral and advocacy, advance care planning and grief and bereavement. After a patient is enrolled with hospice a patient focused care plan is generated with a multi-disciplinary approach. Team members consisting of a nurse, a social worker and a chaplain complete a individual discipline specific assessment that are generated into a comprehensive care plan. This care plan outlines the needs and goals for the patient. Social workers are required to complete a psychosocial assessment within the first five days after a patient is admitted to hospice services. This assessment consists of general patient information including ethnic/cultural evaluation, learning barriers, interests and education as well as a mental/emotional assessment looking at cognitive, emotional, coping, support systems and grief issues. Designing a treatment plan and goal setting is very different when working with patients who are dying. The social worker’s goal is to be able to build trust and establish a relationship before the patient passes. Sometimes the social worker may only have the first home visit. During the initial assessment it may be critical to provide as much information and assistance as possible. Funeral and mortuary planning often top the priority list. Preparing the patient and family for the impending death is also critical. Educating the family is the role of all the hospice team members. At times social workers may have to discuss and assist with non-traditional social work tasks, such as assessing pain, assisting with personal care, and assisting with body preparation after death. Knowing how to “meet the patient and family where they are” is very important. It is not our job as hospice social workers to impose any particular agenda. We are there to support the patient and their family’s wishes, and address their concerns be it financial, emotional or ethical. It's like being in the passenger seat, and holding up the map for them, they are in the driver's seat. Understanding the family dynamics surrounding the patient is an important role of the social worker. Oftentimes family members may disagree on the end of life decisions of their loved one. In these cases, we can help educate family members regarding any misconceptions or dilemmas they may be facing during this stressful time. Many times it is just the presence of the social worker and other team members, that offers a sense of support to the patient and family, because they know they do not have to do this alone. During the hospice process families often struggle with self care. They feel guilty taking time away from their loved one. We help them realize that they need to first take care of themselves so that they can be healthy, strong and able to then care for their loved one. Creating a safe place for the patient and their family to talk about death is vital to the hospice journey. It is the social worker’s job to create a safe place for this discussion. Listening is a vital component of a hospice social workers job and just may be the most important thing we do. The gift of genuinely listening allows the person speaking to see and understand their experience in a different way. I have been invited to listen to many stories that have transported me to different counties, to the beaches of Normandy, to Pearl Harbor, to the commodities line during the depression and thousands of other places. People who are dying often want to know their life had purpose and by sharing their experiences they may feel at peace. There are moments in our job that we sit in silence with the patient and family because there are no words or actions that can take away the pain and reality of the situation, so perhaps the biggest gift we can offer is to stand beside them and not turn away from the pain. There are so many situations, experiences and gifts that are shared in hospice care. To be a hospice social worker is a great opportunity to experience the flexibility, complexities and variability of social work. I often say we wear many hats doing anything from case management, counseling, community referrals, funeral planning, conflict resolution, to being a friendly visitor.
I have included a short video that I found on YouTube that reveals a glimpse into the life of a hospice patient if anyone is interested. I could go on and on about hospice and why I love it but I think I said enough. I feel it is an honor to be able to serve hospice patients and their families during such a vulnerable time.
Kastenbaum, B. (2002). Hospice Option. In Macmillan Encyclopedia of Death and Dying (pp. 437-441). Michigan: Thomson Gale.
NHPCO. (2009). The National Hospice and Palliative Care Organization. Retrieved April 2010, from NHPCP: http://www.nhpco.org
