Hospice is a model of care that focuses on providing physical and emotional comfort to people who are dying, and on supporting their families, during the end-‐of-‐life period. Several core principles form the basis for the hospice philosophy, including:
- Dying is a normal and expected part of living.
- Hospice care is person-‐centered rather than disease-‐centered, in that its goal is to relieve pain and other distressing symptoms that may be experienced during the end-‐of-‐life period (as opposed to treat or cure disease).
- Hospice care is family-‐centered and holistic (i.e., it addresses the person’s and family’s physical, emotional, spiritual, and social needs).
- Hospice care seeks to help the person experience a peaceful, comfortable, and dignified death.
Hospice provides palliative care (that is, care that will make you more comfortable but will not prolong your life) in addition to services such as counseling, respite, and bereavement care (support for your family after your death). Hospice care is delivered by an interdisciplinary team of doctors, nurses, home health aides, certified nursing assistants, counselors, social workers, religious or spiritual leaders, and volunteers. Hospice care comes to the client, wherever the client is. Many people choose to receive hospice care in their homes, but it can also be provided in settings such as long-term care facilities, hospice facilities, and hospitals. Hospice services are available 24 hours a day, 7 days a week.
When is it time for hospice?
Many people think accepting hospice care is “giving up,” but in fact, hospice care does not hasten death. It simply seeks to improve quality of life during the end-‐of-‐life period. Although it can be tempting to put off hospice until you “really need it,” you can derive the most benefit from hospice services when you start them sooner, rather than later. Timely admission into a hospice program allows the hospice team to fully evaluate your family’s needs and develop an appropriate care plan. In addition, the regular visits from the hospice nurse and other team members help the hospice team to anticipate needs and intervene before a crisis situation develops. It is important to understand that entering a hospice program does not mean that you have to stay— you can discontinue hospice services at any time.
Signs that it might be time to initiate a discussion about a hospice referral with your doctor may include the following.
- You have experienced significant and rapid functional decline in recent months (for example, you are now wheelchair-‐ or bed-‐bound, your speech has become unintelligible or you are no longer able to speak, or you require nearly total assistance with activities of daily living).
- Your breathing is significantly impaired, but you do not want to be placed on a ventilator (or you want to discontinue mechanical ventilation).
- You are unable to maintain adequate nutrition, hydration, or both, and you do not want a feeding tube placed.
Choosing a hospice
Before you need hospice services, you may want to research hospice providers in your community. Both the National Hospice and Palliative Care Organization (NHPCO) and the National Association for Home Care & Hospice (NAHC) offer hospice locator tools on their websites. Once you have a short list of candidates, gather additional information that will help you gauge whether or not the hospice is a good fit. In addition to standard questions (for example about Medicare certification, licensure, accreditation, and quality assurance), here are some questions you may want to ask:
- Do care providers hold certification in hospice and palliative care? Certification in hospice and palliative care is not required in order to practice, but it does indicate specialized study and expertise in the field.
- What services does the hospice provide? In addition to “standard” services that all hospices provide, some hospices provide extra services that may be of benefit to your family, such as “pre-‐hospice” care for those who are not yet medically ready for hospice. Also check to see how the services you are currently receiving align with the services the hospice provides. Is there anything currently being done for you that the hospice would not be able to do?
- How does the hospice handle admissions? Can the admissions process be completed during non-‐standard business hours? How quickly can the hospice begin providing services?
- How will the hospice address your specific concerns? Mention any concerns you may have and ask how the hospice staff would address them.
- How does the hospice handle in-‐home support should a crisis arise? Some hospices are prepared to send a member of the hospice team to your home at any time, even during non-standard business hours. Others provide support over the telephone, but may not send staff to your home. Ask if all members of the hospice team are available to provide support in a crisis situation that occurs at night or on a weekend, or if only some team members are available. Also ask about the average response time.
- How does the hospice handle in-‐patient care? Even if you are primarily receiving care at home, it may become necessary for you to go to an in-‐patient facility for the management of complicated symptoms or for periods of respite. Find out which facilities in the community the hospice organization partners with, and visit the facilities to make sure you are comfortable receiving care there, should the need arise.
- What are the hospice’s expectations regarding family involvement in caregiving? Make sure that the hospice’s expectations are consistent with the care your family members are willing and able to provide.
- What services do volunteers offer? Also find out how quickly a volunteer is able to come if you request one, and how the hospice screens and trains volunteers.
Paying for hospice
Hospice care is covered by Medicare, Medicaid (in most states), the Veterans Health Administration, and most private insurance plans. If you must pay out of pocket for hospice care, you should be eligible for financial assistance. Donations, grants, and memorial funds allow many hospice providers to provide services at a reduced cost or no cost to families in financial need.
“Choosing a Hospice: 16 Questions to Ask.” American Hospice Foundation.
“Choosing a Quality Hospice for You or Your Loved Ones.” National Hospice and Palliative Care Organization, 2014.
“Hospice Care.” American Cancer Society, April 8, 2014.
“Hospice Care: A Consumer’s Guide to Choosing a Hospice Program.” National Hospice and Palliative Care Organization, 2009.
“Not Gloom and Doom: Demystifying Hospice.” B. Norman. MDS/ALS Newsmagazine. January–February 2010, vol. 15, no. 1. “The Patient’s Guide.” ALS Maine Collaborative, 2016.