German priest and scholar Martin Luther once said, “Every man must do two things alone; he must do his own believing and his own dying.” While some people share Luther’s view on dying, others do not believe that the process should be so solitary. Hospice care is available for people who want the help and support of a team of caregivers, family members, and health professionals during their last months of life.
Instead of focusing on treating one’s illness, the goal of hospice care is to make a patient as comfortable and as much at peace as possible in the months before he or she passes away. Several professionals can be members of a hospice care team, and the actual hospice care itself can take place in a variety of locations. Regardless of where it takes place, though, hospice care provides help and support for the patient and his or her family members.
Hospice Care: An Overview
Hospice care is end-of-life care intended for patients who are terminally ill and are expected to pass away within six months. Hospice care can last longer than six months, though, as long as long as a patient’s doctors can verify that he or she has a condition that will end his or her life within months. Many of the 1.4 to 1.5 million people who receive hospice care each year in the United States have cancer, but they may have other life-ending conditions, such as heart disease or kidney failure.
The goal of hospice care is not to try to cure these diseases. Instead, hospice care focuses on helping patients and their families achieve the highest quality of life possible during whatever time remains. During hospice care, patients and their families receive medical, emotional, spiritual, and social support so that they can have as much comfort, peace, and dignity as possible. One of the main goals of hospice care is to ease patients’ pain and other symptoms so that they can remain as comfortable and as alert as possible during their final months of life. Another goal of hospice care is to help patients’ families cope during a sad and difficult time in their lives.
Hospice care can be provided wherever a patient is spending his or her final months of life. Often, hospice care occurs in a patient’s home, but the care can also take place at a family member’s home, a hospital, a nursing home, or a dedicated hospice facility.
Patients may enter hospice care because they have exhausted the treatment options for curing their diseases. Also, some patients who enter hospice care have chosen not to receive such treatments for a variety of reasons, including that some of these treatments can have terrible side effects that these people do not want to suffer through. For example, chemotherapy is medication to treat cancer that can cause side effects such as nausea and vomiting, diarrhea, stomach and intestinal problems, mouth sores, and pain. A person may decide that enduring such side effects is not worth the potential benefits of the treatment.
Since hospice care covers many different dimensions of wellness, a group of people work together to provide this care. If a patient is not staying at a hospital or a dedicated hospice care facility, members of his or her hospice care team will regularly visit the patient wherever he or she is living (ex. his or her home or a nursing home). Hospice care teams can include doctors, nurses, home health aides, physical therapists, occupational therapists, speech therapists, spiritual counselors, volunteers, social workers, and bereavement counselors.
These team members work together to provide the following hospice care services:
• Physician Services: Doctors with expertise in pain and symptom management and end-of-life care oversee hospice care. They approve the care plan and also work together with the hospice care team to make sure the plan is implemented.
• Nursing Care: Nurses assist the doctors in providing pain and symptom management and can provide support for friends and family members of the patients as well. They help to educate patients, family members, and friends about what is happening with the patients’ health and also serve as the link between patients, family members, and the doctors.
• Spiritual Support and Counseling: Chaplains, priests, ministers, or other spiritual advisors can provide spiritual guidance, support, and counseling for patients and their family members and friends. This support and counseling may include help exploring what death means to a person, saying goodbye, and performing spiritual or religious ceremonies or rituals.
• Social Services: Social workers advise patients and their families, act as their advocates, and make sure that they have access to the resources that they need. Social workers can provide counseling and emotional support in addition to assistance addressing issues such as insurance and financial concerns.
• Home Health Aide Support: Home health aides can help patients with day-to-day care, such as dressing, bathing, and eating.
• Trained Volunteer Support: Trained hospice volunteers can assist with a variety of needs ranging from providing company and compassion to patients and their families to helping with transportation and other practical tasks (shopping, babysitting, etc).
• Physical, Occupational, and Speech Therapies: Specialists in these areas can help hospice patients learn new ways to carry out tasks that may have become difficult for them as a result of their conditions, such as walking, getting dressed, and eating.
• Respite Care: Taking care of a terminally ill patient can be intense and exhausting. Hospice facilities and volunteers can give family members of terminally ill patients a break by providing respite care. During respite care, these hospice facilities and volunteers take over the care of the terminally ill patients for a short period of time.
• Inpatient Care: If a patient is being cared for at home or in a nursing home, there may be times when he or she needs to be admitted to a hospital or a hospice inpatient facility. This may occur when a patient’s symptoms and/or pain cannot be managed without certain equipment that can only be found in a hospital or hospice facility. For example, it may be necessary to give pain medication straight into a patient’s vein using an IV. Also, sometimes a hospice patient may need round-the-clock nursing care and may need to be in a hospital or hospice facility to receive such care. Even when a patient is admitted into inpatient care, though, his or her hospice care team still remains involved in the care.
• Bereavement Support: When a person passes away, it is normal for his or her friends, family members, and other caregivers to grieve. Everyone goes through this bereavement process at a different speed, and people also experience grief in different ways. Some people feel angry, while others feel lonely, guilty, confused, or afraid. When people are able to talk about these feelings and about their loved ones who passed away, they are better able to emotionally heal and readjust. Bereavement counselors provide this support and guidance to friends and family members before and up to one year after a patient’s death in hospice.
Choosing whether or not to utilize hospice care can be a big decision. In hospice care, a patient and his or her family will receive care in many different areas of well-being (ex. physical, spiritual, emotional, and social dimensions) from a team of professionals, caregivers, and volunteers. However, a patient will not receive treatment for his or her life-ending illness. Rather, the patient and his or her family members will be made to feel as comfortable and as at peace as possible through services including pain and symptom management, spiritual counseling, home health aide support, and bereavement counseling.
Selecting hospice care is not necessarily a permanent decision. After a patient enters hospice care, he or she can choose to leave and may even do so to receive treatment for his or her illness.
Patients considering hospice care may be concerned about the cost, but often, the cost of hospice care is less than that of an inpatient program at a hospital or nursing home. This is because hospice patients only pay for the specific care services that they need, and also, volunteers help provide hospice care for free. The cost that a patient ends up paying for hospice care will depend on his or her insurance plan, but often, insurance plans cover hospice care services.
If a person is considering hospice care, he or she can ask his or her doctor what programs are available in his or her community. Additionally, he or she can contact a hospital’s social worker or a care manager for a recommendation of local hospice providers and facilities. Finally, a person considering hospice care can talk with family members, friends, or neighbors who have used hospice services in the past for advice.