Hospice is not a place. It is a system of providing care, a way through which an individual can face the likely end of his/her life and achieve the best life possible in the time remaining—as defined by the patient. Hospice is a team-oriented approach that coordinates medical care, pain management, and emotional and spiritual support. Team members tailor care to meet the needs and wishes of the patient while also supporting his/her loved ones.
At the center of hospice is the belief that each person has the right to die pain-free and with dignity, and with the knowledge that his/her family will receive the support they need. Core to the hospice philosophy is the practice of enabling the individual and his/her family to individualize choices for end-of-life care through advance directives and discussions of goals of care.
Hospice focuses on caring, not curing, and it is provided to individuals of any age, religion, race, or illness. Hospice care is covered by Medicare, Medicaid, most private insurance plans, HMOs, and other managed care organizations.
Who is eligible?
An individual eligible for hospice is one who is certified by two physicians that he/she has a life expectancy of six months or less if his/her disease were to run its natural course. Hospice care can continue past six months if a physician certifies that the individual continues to have a limited life expectancy. The most common diagnoses for individuals in hospice include end-stage dementia, cancer, stroke, and chronic illnesses impacting the lungs, heart, or kidneys.
Symptoms that indicate that a person may be eligible for hospice include weight loss, altered mental status, loss of function such as walking, sleeping more during the day, loss of appetite, incontinence, and/or increasing symptoms related to the disease process.
The Hospice Team
RN Case Manager
A registered nurse (RN) serves as the case manager, the primary director of care for the individual admitted to the hospice program. It is his/her responsibility to coordinate all care among and between the disciplines of the hospice team. The case manager may also be a certified hospice and palliative care specialist. The on-call nurse assists the case manager by visiting the patient in his/her absence.
The social worker’s role on the hospice team is to provide counseling and support to the patient and his/her family. Other services that he/she may supply are financial and legal information (topics such as power of attorney, the Family and Medical Leave Act, money management, Social Security Disability) and resources, such as community resources and resident and family advocacy.
Hospice aides are trained and certified to perform personal care, companionship and support. They are available to help with personal hygiene, such as bathing, dressing, linen changes, and other support to maintain clean and safe living space. The case manager supervises the hospice aides.
Spiritual care is tailored to the individual’s personal and spiritual points of view regardless of his or her faith, religion, or cultural background. The chaplain can provide spiritual and emotional support by listening to life stories and experiences, and talking about the patient’s spiritual concerns. The chaplain may also explore the role of spirituality in illness, suffering, and healing. Together, the chaplain and the patient’s spiritual leader make sure the individual is getting the highest quality of spiritual care.
Both the Hospice Medical Director and the patient’s primary care physician approve admission to hospice. He/she manages the resident's medical needs and concerns in partnership with the hospice team. The Hospice Medical Director meets twice a month with the hospice team and is available 24 hrs/day for a consultation about pain and symptom management.
A volunteer coordinator on the hospice team will call the hospice patient or the family to discuss how a volunteer may help as a friendly visitor or to provide respite for a family member. The coordinator may also make a referral for volunteer services from another member of the team. All Goodwin House Hospice volunteers are screened, trained, and supervised by hospice team members.
Support services and resources are available to the patient’s family for 13 months after the patient’s death. Support may be provided through written communication, by telephone, or in face-to-face meetings. The hospice bereavement coordinator and hospice social worker facilitate additional services as needed.
Therapies such as pet, massage, and physical or occupational therapy are available on a limited basis. These therapies are used to treat the resident’s symptoms or to improve the overall quality of life. The case manager will determine the availability of these therapies based on the plan of care for the patient.
How Hospice Works
Anyone can refer an individual to hospice – family, friend, physician, healthcare worker, or a volunteer. Two physicians must certify that an individual referred to hospice has a life expectancy of six months or less if the disease were to run its natural course.
Upon referral, the hospice team will collaborate with the individual’s primary care physician and staff of the Health Care Center. The patient will let the hospice team know whom he/she wants involved in the initial hospice meeting. If the individual cannot speak for him/herself, the Medical Power of Attorney will be contacted to collaborate about the individual’s care.
Family Meeting to Determine Plan of Care
The initial meeting to admit an individual to hospice will include family members or the Medical Power of Attorney, and the discussion will focus on the goals of care. The patient and his/her family will be asked about their important interests and values. Questions may include: Does he/she still want hospitalization and what for? What kind of treatment does he/she want to pursue? Does he/she have a DNR (Do Not Resuscitate) order? Where does he/she want to live out his/her life and how?
This discussion clarifies the goals of the patient, and together the patient, the family, and the hospice team develop a Plan of Care that incorporates the patient’s wishes and will guide the hospice care team. The patient and his/her caregivers will be consulted if there is a change in condition that could result in a change in the Plan of Care.
Other information discussed at the initial meeting includes contact information for the primary caregivers; suggested adjustments to medications; how many times a nurse will visit, and the frequency of visits by the social worker, chaplain, aide and/or volunteer. The discussion may also include after-death arrangements, such as donation of remains, cremation or designation of a funeral home and burial arrangements.
Nearing the End of Life
The hospice team updates the family and caregivers about the individual's progression toward death. If possible, the family is encouraged to visit and comfort the patient.
Depending on the patient’s wishes, a member of the hospice team, such as a chaplain, can be at the bedside after the patient dies.
If the hospice patient dies in the Health Care Center, HCC personnel will contact the hospice nurse on call. The nurse and health care staff will call the family and jointly determine when the body will be removed (preferably within four hours after death). The nurses will also call the attending physician and contact the hospice team.