The Hospice Option
As we have seen, most people would like to die at home among family and friends. An important barrier to this choice is the availability of support systems when the person has a terminal disease. Most people believe that they have no choice but to go to a hospital or nursing home. However, another alternative exists. Hospice is an approach to assisting dying people that emphasizes pain management, or palliative care, and death with dignity (Knee, in press; Russo, 2008). The emphasis in a hospice is on the dying person’s quality of life. This approach grows out of an important distinction between the prolongation of life and the prolongation of death, a distinction that is important to Jean, the woman we met in the vignette. In a hospice the concern is to make the person as peaceful and comfortable as possible, not to delay an inevitable death. Although medical care is available at a hospice, it
Hospice nurse talking to couple.
is aimed primarily at controlling pain and restoring normal functioning. This orientation places hospices between hospitals and one’s own home in terms of contexts for dying.
Modern hospices are modeled after St. Christopher’s Hospice in England, founded in 1967 by Dr. Cicely Saunders. Hospice services are requested only after the person or physician believes that no treatment or cure is possible, making the hospice program markedly different from hospital or home care. The differences are evident in the principles that underlie hospice care: Clients and their families are viewed as a unit, clients should be kept free of pain, emotional and social impoverishment must be minimal, clients must be encouraged to maintain competencies, conflict resolution and fulfillment of realistic desires must be assisted, clients must be free to begin or end relationships, and staff members must seek to alleviate pain and fear (Saunders,
Two types of hospices exist: inpatient and outpatient. Inpatient hospices provide all care for clients; outpatient hospices provide services to clients who remain in their own homes. The outpatient variation, in which a hospice nurse visits clients in their home, is becoming increasingly popular, largely because more clients can be served at a lower cost. Having hospice services available to people at home is a viable option for many more people, especially in helping home-based caregivers cope with loss (Grande et al., 2004).
Hospices do not follow a hospital model of care (Knee, in press). The role of the staff in a hospice is not so much to treat the client as it is just to be with the client. A client’s dignity is always maintained; often more attention is paid to appearance and personal grooming than to medical tests. Hospice staff members also provide a great deal of support to the client’s family.
Researchers have documented important differences between inpatient hospices and hospitals (Kastenbaum, 1999). Hospice clients are more mobile, less anxious, and less depressed; spouses visit hospice clients more often and participate more in their care; and hospice staff members are perceived as more accessible. Significant improvements
in clients’ quality of life have been documented after hospice placement (Cohen et al., 2001).
Although the hospice is a valuable alternative for many people, it may not be appropriate for everyone. Those who trust their physician regarding medical care options are more likely to select hospice than those who do not trust their physician, especially among African Americans (Ludke & Smucker,
2007) . Most people who select hospice are suffering from cancer, AIDS, or a progressive neurological condition (most often amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease; Kastenbaum, 1999). Other disorders may necessitate treatments or equipment not available at hospices, and some people may find that a hospice does not meet their needs or fit with their personal beliefs.
Research indicates that the perceived needs of hospice clients, their families, and the staff have not always coincided, but getting input from various stakeholders can help improve service (Hiatt et al., 2007). Staff and family members tend to emphasize pain management, whereas many clients want more attention paid to personal issues, such as spirituality and the process of dying. The important point from this study is that the staff and family members may need to ask clients what they need more often rather than making assumptions about what they need.
How do people decide to explore the hospice option? Kastenbaum (1999) lists six key considerations (see also http://www. hospicefoundation. org; Knee, (2009)):
• Is the person completely informed about the nature and prognosis of his or her condition? Full knowledge and the ability to communicate with health care personnel are essential to understand what hospice has to offer.
• What options are available at this point in the progress of the persons disease? Knowing about all available treatment options is critical. Exploring treatment options also requires health care professionals to be aware of the latest approaches and be willing to disclose them.
• What are the person’s expectations, fears, and hopes? Some older adults, like Jean, remember or have heard stories about people who suffered greatly
at the end of their lives. This can produce anxiety about one’s own death. Similarly, fears of becoming dependent play an important role in a person’s decision making. Discovering and discussing these anxieties helps clarify options.
• How well do the people in the persons social network communicate with each other? Talking about death in many families is taboo (Book, 1996).
In others, intergenerational communication is difficult or impossible. Even in families with good communication, the pending death of a loved relative is difficult. As a result, the dying person may have difficulty expressing his or her wishes.
The decision to explore the hospice option is best made when it is discussed openly.
• Are family members available to participate actively in terminal care? Hospice relies on family members to provide much of the care, which is supplemented by professionals and volunteers. We saw in Chapter 13 that being a primary caregiver can be highly stressful. Having a family member who is willing to accept this responsibility is essential for the hospice option to work.
• Is a high-quality hospice care program available? Hospice programs are not uniformly good. As with any health care provider, patients and family members must investigate the quality of local hospice programs before making a choice. The Hospice Foundation of America provides excellent material for evaluating a hospice.
Hospice provides an important end-of-life option for many terminally ill people and their families. Moreover, the supportive follow-up services they provide are often used by surviving family and friends. Most important, the success of the hospice option has had important influences on traditional health care. For example, the American Medical Association (2007) officially endorses the use of prescription medications, including controlled substances, to provide pain management.
Despite the importance of the hospice option for end-of-life decisions, terminally ill older adults cannot benefit from it unless two barriers are overcome (Kastenbaum, 1999): family reluctance to face the reality of terminal illness and participate in the decision-making process; and physician reluctance to approve hospice care for patients until very late in the terminal process, thereby depriving them of the supportive benefits they may have otherwise received.
As the end-of-life approaches, the most important thing to keep in mind is that the dying person has the right to state-of-the-art approaches to treatment and pain management. Irrespective of the choice of traditional health care or hospice, the wishes of the dying person should be honored, and family members must participate.