Courtesy of WebMD.com | 12.14.204 _ Reviewed by Melinda Ratini, DO, MS
What Is Hospice?
During the course of your illness, you may come to realize that treatments meant to cure or slow your disease are no longer working. Although it’s a difficult decision, you’ve concluded that the burdens of aggressive treatment outweigh any benefits, and you’re unwilling to endure any more discomfort or risk of harm.
Instead, you’d rather spend your remaining time with family and friends. Maybe you yearn to reflect on your life and create a legacy for your loved ones, such as a journal or a videotaped message. Perhaps you need to put your financial affairs in order, or seek spiritual guidance as death nears.
Despite your illness, the quality of each day still matters to you. You want relief from pain, from shortness of breath, and from other symptoms so that you can focus on the matters dearest to you, including saying good-bye to your loved ones.
That’s when hospice, or end-of-life care, may help.
Hospice is a type of palliative care, but differs in important ways. Palliative care serves anyone who is seriously ill, not just those who are dying. Palliative care itself doesn’t seek to cure, but provides pain relief and symptom management, and addresses the emotional and spiritual needs of patients and families. Many patients receive palliative care while they’re still pursuing a cure.
Hospice also provides wide-ranging care and support to patients and families. However, hospice patients stop curative treatments, although they still receive medications to manage pain and other symptoms. Hospice serves people with a life-expectancy of six months or less because of cancer, dementia, heart disease, lung disease, and other illnesses.
Hospice emphasizes quality of life and patient involvement in decision making. A hospice team typically includes a doctor, nurse, social worker, counselor, chaplain, home health aide, and trained volunteers. They work together to meet a patient’s physical, emotional, and spiritual needs.
Hospice is for family members, too. It can provide respite care, bereavement counseling, and help with practical matters such as transportation and household duties.
Eligibility for Hospice
You’re eligible to enter hospice care if your doctor states that you have a terminal illness and that death can be expected in six months or less if your illness follows its normal course. However, you may stay in hospice beyond six months if your doctor and the hospice team certify that you still have only a short time to live.
Bear in mind that hospice isn’t always a permanent choice. For example, some elderly patients with failing kidneys choose hospice rather than undergo dialysis. But they can still change their minds, leave hospice, and pursue dialysis after all. Or if a patient’s illness improves, he or she can leave hospice and return later.
Hospice Settings Vary
Many patients receive hospice care in the familiarity of their own home, where friends and family can visit freely. A relative or friend usually serves as the primary caregiver. But patients can also receive care at hospice centers, hospitals, nursing homes, and other long-term care facilities.
Once you enter hospice, an interdisciplinary hospice team will develop an individualized care plan for your pain management and symptom control. Hospice staff will check on you regularly to assess your condition and provide services. A member of the hospice team is on call 24 hours a day, seven days a week.
Hospice services typically include:
- A doctor’s medical care, either from your own doctor or a doctor connected with the hospice program
- Regular home care visits from nurses to monitor your condition and maintain your comfort and care
- Home health aide and homemaker services to help with your personal needs, including bathing, dressing, cleaning, and cooking
- Chaplain services for you and your loved ones
- Social work and counseling services
- Medications to relieve pain and control symptoms
- Medical equipment and supplies
- Dietary counseling
- Physical, speech, and occupational therapy
- Volunteer support to help your loved ones
- Bereavement counseling for your loved ones
Setting Goals for Hospice Care
What is a “good death”? The question may be startling, but it may not be as hard to answer as it seems. For example, many people yearn to avoid a painful death, to make amends and say good-bye, and to have family and friends recognize their life in its fullness and meaning.
Ultimately, the definition of a good death is highly personal. However, in a 2000 study published in the Annals of Internal Medicine, Karen E. Steinhauser, PhD, and her colleagues interviewed patients, family members, and health care workers to uncover the elements of a good death.
While stressing there is no “right way to die,” Steinhauser and colleagues identified six themes that contribute to a good death:
- Pain and symptom management. Patients wanted reassurance that pain, extreme shortness of breath, and other frightening symptoms would be well-controlled.
- Clear decision-making. Patients didn’t want to feel disregarded, nor did they want decisions to be made in a state of crisis. They felt empowered when they could communicate with their doctors and make clear decisions and treatment choices.
- Preparation for death. Patients sought ways to prepare for the end of life. They wanted to know what to expect during the course of their illness, and they wished to plan their wills, funerals, and obituaries.
- Completion. Patients emphasized the deep importance of spirituality or meaningfulness at the end of life. “Completion includes not only faith issues, but also life review, resolving conflicts, spending time with family and friends, and saying good-bye,” according to the researchers.
- Contributing to others. Patients wanted to help others by bestowing gifts, time, or knowledge. For example, many dying people felt an urgency to share important life lessons.
- Affirmation of the whole person. Patients wanted to be affirmed as “a unique and whole person,” the researchers write. Their relatives also wanted health care professionals to see the whole person. “Family members were comforted by and spoke with great respect about those who did not treat their loved ones as a ‘disease,’ but understood them in the context of their lives, values, and preferences,” the researchers state.
Since people have individual definitions of a good death, talk to your hospice team about your own vision and how it can be achieved.
How to Find Hospice Care
Start by asking doctors, nurses, social workers, and friends for recommendations. To find hospice care in your area, visit the National Hospice and Palliative Care Organization (NHPCO). If you have trouble using this website, call the NHPCO helpline at 800-658-8898. For languages other than English, call 877-658-8896.
There are more than 5,500 hospice programs in the U.S. Check whether a program meets your needs by asking the program’s administrator these questions:
- What is the role of the patient’s doctor once hospice care begins?
- How will the hospice physician oversee the patient’s care and work with the patient’s doctor?
- Will the same hospice nurse visit at least twice a week?
- Do hospice professionals have special credentials in their areas?
- Is the hospice program certified, licensed, and reviewed by the federal government or the state (if state licensure applies)? Does it have any other certifications?
- Does the hospice staff routinely evaluate and discuss pain control and symptom management with patients and families?
- How quickly does the hospice staff respond to requests for more pain medication?
- How does the hospice meet the spiritual and emotional needs of patients and families?
- How quickly does the hospice respond to after-hours emergencies? Are chaplains and social workers available after-hours?
- Is respite care available for caregivers?
- What screening and type of training do hospice volunteers receive before they work with patients and families?
- Are all hospice costs covered by health insurance, or will the patient pay out-of-pocket for some services?
- What will happen if care cannot be managed at home?
- How does the hospice help the patient and loved ones deal withgrief and loss?
Other Hospice Resources
American Academy of Hospice and Palliative Care
WebMD Medical Reference