The modern hospice movement was founded in the 1960s to offer compassionate care for the dying. Since then, the number of people cared for by hospice has grown every year. In 2005, 1.2 million people in the United States alone turned to hospice when faced with a life-limiting illness.
Why do so many people choose hospice? A glance through the many websites sponsored by hospice programs, healthcare organizations, and bereavement support groups quickly reveals hundreds of passionate testimonials written by family members of hospice patients. Despite the variety of situations and people in these stories, each one expresses heartfelt appreciation for a hospice program and staff. Reading through them all at once, you get the overwhelming impression of the goodness of hospice, of something truly helpful done right.
Hospice care begins when the patient’s illness no longer responds to curative treatments. The focus of hospice care is on comfort during the last stages of illness—relieving pain, treating symptoms of the illness, and providing psychological and spiritual support. The goal is to extend the patient’s quality of life as long as possible, to ease the person’s passing, and to support loved ones after their loss.
Hospice is a unique, team-oriented approach to end-of-life care. A hospice team generally consists of a doctor and registered nurse trained in palliative care; a social worker who facilitates family meetings, provides counseling, and provides referrals for legal, financial, and community assistance; and a chaplain to give spiritual and emotional support. The team also includes specially trained volunteers, who give their time to help caregivers, doing things around the house, helping with nursing, running errands, providing transportation, or just spending time with the patient and family in loving support. These volunteers are an important part of any hospice team.
How Hospice Helps Caregivers
Being a caregiver to a dying loved one can be emotionally, physically, and spiritually demanding. It can also be fulfilling, even inspiring, given the right circumstances. Hospice aims to provide the type of care and support that can help a patient and her family spend their last months together in the most meaningful way possible.
Quality of life. Mike Humble, a hospice social worker at Enclara Health, says one of the most common expressions of appreciation he hears from family caregivers is for the gift of time. Hospice teams are set up to efficiently take over many practical and logistical tasks from the caregiver, like ordering medications and equipment, coordinating doctor appointments, arranging transportation, doing errands, and locating medical, financial, and community support. This frees the family to spend more quality time with their loved one, doing the things they enjoy.
It can be a great relief for a caregiver to know that you don’t have to do, and be responsible for, everything yourself. Hospice gives you a shoulder to lean on.
Relieving stress and worry. When a loved one has a life-limiting illness, caregivers understandably worry about what the future will bring. What will the next weeks and months be like, and what can be done medically and otherwise to give comfort?
Information. Hospice teams help relieve the stress of not knowing by communicating their experience with compassion and respect. They let caregivers and their families know what to expect from the dying process. The hospice philosophy views death as a natural part of life. Denying or hiding from it only makes it more painful for everyone involved. Hospice helps family members come to terms with reality, so they can do or say what they need to before the end of their loved one’s life.
Clear and specific care plan. Teams work together with the patient, her doctor, caregivers, and family to design a care plan for relieving pain and other symptoms, and extending quality of life. The plan is continually updated as the patient’s condition changes. Each family member and caregiver is assigned clear tasks that they are able and willing to do, and the hospice team is available around the clock to answer questions, solve problems, and make home visits as needed.
Spiritual support. The hospice chaplain offers spiritual comfort to the patient and her family should they wish it. Through personal and telephone visits, a chaplain offers an open, sensitive, nonjudgmental presence and an acceptance of different beliefs, cultures, and values. In general, hospice chaplains have a good deal of experience with death and dying, often more than non-hospice clergy have, and they bring their experience to bear when helping people with the spiritual aspects of dying.
Peer support groups. Most hospice programs sponsor support groups for patients, caregivers, and families. Depending on the size of the local community, groups may be specialized into subgroups, such as spouse caregivers, children caregivers, men, and women. Hospice also offers bereavement support groups for family members for up to a year after their loved one’s death. In peer groups, caregivers can share their experiences with others who are faced with the same challenges, which can be an invaluable support.
According to hospice social worker Mike Humble, family and community expectations of caregivers can leave them ignoring their own care and support. Like other “invisible” populations, such as AIDS patients and chronically ill patients, caregivers may be unable or unwilling to come forward publicly for support. The recent emergence of online support groups provides the opportunity to share with peers anonymously. This CareCommunity website offers online community support forums here.
The majority of people who use hospice have chosen to end their lives at home. Hospice facilitates this choice by providing a care plan tailored to home care. Hospice teams help the family set up the home, arrange for equipment and medications, and schedule transportation to and from care facilities, as needed. They provide home healthcare training, doctor visits, and on-call nursing. Hospice volunteers help caregivers with home nursing and domestic tasks like shopping, cooking, and running errands. Hospice is there in support when the patient is close to death, and will take over necessary arrangements at the end, when the family may be emotionally overwhelmed.
Hospice also offers their program to patients in hospitals, nursing homes, and other care facilities. If a patient needs to be moved from home to a care facility, hospice staff make the arrangements and maintain continuity of care, including ongoing support of caregivers and family members in the new setting.
Another commonly cited benefit of hospice is the program’s focus on family involvement and communication. Starting with the initial family meeting, hospice facilitates discussion between family members about their loved one’s condition and the options for care. Hospice encourages the participation of all willing family members in the care plan. Hospice social workers and counselors help resolve grievances between family members as they arise, so that rifts may be healed and disputes settled. Hospice staff are committed to helping people come to the meaningful relationship with their loved one that they most want.
Shedding light on finances. Practically speaking, a care plan depends on disclosure of the patient’s financial situation. Hospice encourages open sharing of information between family members, when appropriate. Social workers are experienced in financial planning strategies, including health insurance choices, government and community-based support options, and tips for making money last. Hospice can also help facilitate estate and funeral planning if these details have not already been taken care of.
Communication among family about financial matters lets everyone know what to expect in terms of financial burden and with regard to the estate. Having this information in the open helps clear the space for family to concentrate on giving support to their loved one and to each other, and preparing to say goodbye.
When engaging with hospice, it’s good to remember you’re only one of many families working with the same hospice program, sharing the same resources, and depending on the same staff. For all the wonderful services hospice offers, it is not designed to be a full-time healthcare service. Hospice staff provide support to primary caregivers (whether family or professional) with a guided plan for end-of-life care, but they do not provide most of the care themselves. That responsibility stays with the caregivers.
After the care plan is made, hospice teams are best viewed as consultants—compassionate experts in their fields available to solve problems, provide information, give advice, arrange certain kinds of logistics, and facilitate communication. Keeping the scope of the program in mind will ensure that your experience is as positive as that of the many people who have publicly acknowledged their gratitude for hospice.
Hospice Foundation of America. Provides much hospice information, including a community hospice locator.
http://www.hospicefoundation.org/
International Association for Hospice and Palliative Care, whose mission is “to increase the availability and access to high-quality hospice and palliative care for patients and families throughout the world.”
http://www.hospicecare.com/
American RadioWorks, “The Hospice Experiment.” An hourlong radio documentary about hospice aired on National Public Radio. Website lets you listen to it or read the transcript.
http://americanradioworks.publicradio.org/features/hospice/index.html
American Academy of Hospice and Palliative Medicine (AAHPM) is an organization of physicians dedicated to excellence in and advancement of palliative medicine.
http://www.aahpm.org/