What is Hospice?
Hospice is a service that provides compassionate medical care at the end of life. Members of a person’s hospice team generally include a registered nurse, a physician, a social worker, a spiritual counselor, healthcare aides and trained volunteers. The goal of hospice care is to maintain or improve quality of life by addressing the physical, social, emotional and spiritual needs of people who are in the terminal phase of an illness (no cure is possible) and are no longer seeking life-prolonging treatment. Hospice care also offers important support for the caregivers and family during the illness, and grief support after the death. In order to qualify for hospice care a person needs a doctor’s referral and must meet specific medical eligibility criteria; generally a life expectancy of six months or less. However, you can begin learning about the different hospices in your community and the specific care they provide before receiving a referral.
Finding a Hospice
Many communities have numerous hospice providers. It’s important to interview and choose a hospice that respects your priorities and beliefs, and will honor your end-of-life care choices. Some hospices support the full range of end-of-life options such as palliative sedation, voluntary stopping eating and drinking (VSED), and medical aid in dying, while others may not.
You can begin learning about different hospices in your area by asking friends or family who have experience with hospice for advice. Your referring physician may also have a particular hospice they prefer; ask them for more details. Some private insurers are contracted and will only pay for a particular hospice, so ask your insurance company for a list of covered hospices. Keep in mind that while personal recommendations are a good place to start, there is no obligation to select a certain hospice based on a recommendation.
Additional informational resources are available through the National Hospice and Palliative Care Organization (NHPCO), which represents most hospice programs in the United States. To find an NHPCO member hospice, call their help line at 1- 800-658-8898 or visit www.nhpco.org.
Interviewing a Hospice: Questions to Ask
Once you’ve found a hospice you are interested in, call or have a family member call and ask to speak to an intake person. Make sure to have paper and pen to take notes. Explain your current medical situation, tell them where you live, and ask questions from the list below that are important to you. Listen for concern, kindness and thoughtful responses. Remember, it’s important to choose a hospice that is a good fit for you based on your end-of-life priorities.
General Patient Care:
- What is the role of my physician once hospice care begins? Can I still see my doctor if I want to?
- How will the hospice physician oversee my care and work with my doctor?
- How are my family and caregivers given the information and training they need to care for me at home?
- What happens if my care cannot be managed at home?
- How does the hospice provide services for people in different settings such as nursing homes or other residential care?
- How will the hospice staff work with me, my family and caregivers, and honor my wishes? Are there volunteer services offered? (Often hospice volunteers offer massage, reiki or group therapies.)
Pain Management and Comfort Care:
- Will the hospice staff regularly discuss and routinely evaluate pain control and symptom management with me, my family and caregivers?
- How quickly does the hospice staff respond to requests for additional pain medication? What is the process?
- In the event that the usual doses of pain medications are not sufficient to relieve acute distress is “palliative sedation,” or “total sedation,” an option? (Palliative sedation is the medical procedure of intravenous pain medication given to the point of constant deep sleep until death occurs. Some hospices may need to transfer your care to an institutional setting in order to provide this service.)
- How will hospice meet my spiritual and emotional needs as well as the spiritual and emotional needs of my family and caregivers?
- Is respite care (relief for the caregiver), readily available?
- What bereavement services are available for my family after I die?
My End-of-Life Options:
- If I decide to voluntarily stop eating and drinking as I near death, will hospice support me and my family in that process?
- If my pain or suffering can’t be controlled, will hospice provide palliative sedation to keep me unconscious and comfortable until I die?
- Does the hospice have a policy on medical aid in dying (in authorized states)?
- If I decide to request or utilize aid-in-dying medication, how specifically will hospice support me and my family in that process?
- What is the hospice staff weekend and night coverage? (There should be a nurse available by phone 24 hours a day, seven days a week.)
- How quickly do hospice staff respond to after-hour calls and emergencies?
- Are other services, such as a chaplain or social worker, available after hours? How are calls and visits handled when death occurs?
Paying for Hospice Care:
- Are all hospice-care costs covered by my health insurance?
- What services will we have to pay for out of pocket? Are any services provided at no charge?
- Is there anything else you can tell me about the services hospice can offer to help me at the end of my life?
- Is there anything else I should know or prepare for?
Making the Decision
After completing your research and interviews, compare notes. If able, seek input from a friend or family member. Do not hesitate to call a hospice back or clarification or with lingering questions. If you have not yet received a referral, contact your doctor to discuss the process and your choice in hospice care providers. Your hospice team are the people who will play a vital role in the last months and days of your life, so you want to feel confident that you will be in good hands; treated competently, respectfully and compassionately; and that your end-of-life choices will be honored.