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.