What is Hospice
Hospice is a special concept of care designed to provide comfort and support to patients and their families when a life-limiting illness no longer responds to cure-oriented treatments. Hospice is not just for cancer patients, but for any end stage disease including heart, lung, stroke or patients with end stage Alzheimer's.
Hospice addresses all symptoms of a disease, with a special emphasis on controlling a patient's pain and discomfort.
Hospice deals with the emotional, social and spiritual impact of the disease on the patient and the patient's family and friends.
Hospice offers a variety of bereavement and counseling services to families before and after a patient's death.
Hospice care neither prolongs life nor hastens death. Hospice staff and volunteers offer a specialized knowledge of medical care, including pain management. The goal of hospice care is to improve the quality of a patient's last days by offering comfort and dignity. Care is provided by a team-oriented group of specially trained professionals, volunteers and family members after chemotherapy, radiation and other curative treatments are no longer options.
For those patients who are aggressively treating their illness, palliative care may be appropriate.
Palliative Care
Palliative care is an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment of pain and other problems, physical, psychosocial and spiritual. (Definition from the World Health Organization, 2002.)
It is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy.
Palliative care:
Provides relief from pain and other distressing symptoms.
Affirms life and regards dying as a normal process.
Intends neither to hasten nor postpone death.
Integrates the psychological and spiritual aspects of patient care.
Offers a support system to help patients live as actively as possible until death.
Offers a support system to help the family cope during the patient's illness and in their own bereavement.
Uses a team approach to address the needs of families, including bereavement counseling, if indicated.
Will enhance quality of life, and may also positively influence the course of illness.
For more information on Palliative care, visit the National Hospice and Palliative Care Organization.
Frequently Asked Questions
1. When should a decision about entering a hospice program be made--and who should make it?
At any time during a life limiting illness, it is appropriate to discuss all of a patient's care options, including hospice. By law the decision belongs to the patient. Understandably, most people are uncomfortable with the idea of stopping an all-out effort to beat the disease. Hospice staff members are highly sensitive to these concerns and always available to discuss them with the patient and family.
2. Should I wait for our physician to raise the possibility of hospice, or should I raise it first?
The patient and family should feel free to discuss hospice care at any time with their physician, other health care professionals, clergy or friends.
3. What if our physician doesn't know about hospice?
Most physicians know about hospice. If your physician wants more information about hospice, it is available from the Academy of Hospice Physicians, medical societies, state hospice organizations, or the National Hospice Help-line: 1-800-658-8898.
4. Can a hospice patient who shows signs of recovery be returned to regular treatment?
Certainly. If the patient's condition improves and the disease seems to be in remission, patients can be discharged from hospice and return to aggressive therapy or go on about their daily life.
5. What does the hospice admission process involve?
One of the first things hospice will do is contact the patient's physician to make sure he or she agrees that hospice care is appropriate for this patient at this time. (Hospices have medical staff available to help patients who have no physician.)
The patient will also be asked to sign consent and insurance forms. These are similar to the forms patients sign when they enter a hospital.
The so-called hospice election form says that the patient understands that the care is palliative (that is, aimed at pain relief and symptom control) rather than curative. It also outlines the services available. The form Medicare patients sign also tells how electing the Medicare hospice benefit affects other Medicare coverage for a terminal illness.
6. Is there any special equipment or changes I have to make in my home before hospice care begins?
Your hospice provider will assess your needs and help make arrangements to obtain any necessary equipment. Often the need for equipment is minimal at first and increases as the disease gets worse. In general, hospice will assist in any way it can to make home care as convenient, clean and safe as possible.
7. How many family members or friends does it take to care for a patient at home?
There is no set number. One of the first things a hospice team will do is to prepare an individualized care plan that will, among other things, address the amount of care-giving needed in your situation. Hospice staff visit regularly and are always accessible to answer medical questions and provide support.
8. Must someone be with the patient at all times?
In the early weeks of care, it's usually not necessary for someone to be with the patient all the time. Later, however, since one of the most common fears of patients is the fear of dying alone, hospice generally recommends someone to be there continuously.
9. How difficult is caring for a dying loved one at home?
It's never easy and sometimes can be quite hard. At the end of a long, progressive illness, nights especially can be very long, lonely and scary. So, hospices have staff available around the clock to consult with the family and make night visits if the need arises.
To repeat: Hospice can also provide trained volunteers to provide respite care, to give family members a break.
10. What specific assistance does hospice provide home-based patients?
Hospice patients are cared for by a team of doctors, nurses, social workers, counselors, home health aides, clergy, therapists and volunteers. Each provides assistance based on his or her area of expertise. In addition, hospices help provide medications, supplies, equipment, hospital services, and additional helpers in the home, if and when needed.
11. Does hospice do anything to make death come sooner?
Hospices do nothing either to speed up or to slow down the dying process. Just as doctors and midwives lend support and expertise during the time of child birth, so hospice provides it presence and specialized knowledge during the dying process.
12. Is caring for the patients at home the only place hospice care can be delivered?
No. Although 90% of hospice patient time is spent in a personal residence, some patients live in nursing homes or hospice centers.
13. How does hospice manage pain?
Hospice believes that emotional and spiritual pain are just as real and in need of attention as physical pain, as it addresses each.
14. What is hospice's success rate in battling pain?
Very high. Using some combination of medications, counseling and therapies, most patients can be kept pain free and comfortable.
15. Will medications prevent the patient from being able to talk or know what's happening?
Usually not. It is the goal of hospice to allow the patient to be pain free but alert. By constantly consulting with the patient, hospices have been very successful in reaching this goal.
16. Is hospice affiliated with any religious organizations?
Hospice is not an off-shoot of any religion. While some churches and relations have started hospices (sometimes in connection with their hospitals), these hospices serve a broad community and do not require patients to adhere to any particular site of beliefs.
17. Is hospice care covered by insurance?
Hospice coverage is available widely. It is provided by Medicare nationwide, by Medicaid in over 30 states, and by most private health insurance policies. To be sure of coverage, families should, of course, check with their employer or health insurance provider.
18. If the patient is eligible for Medicare, will there be any additional expenses to be paid?
Medicare covers all services and supplies for the hospice patient related to the terminal illness. In some hospices, the patient may be required to pay a 5% or $5 co-payment on medication and respite care. You should find out about any co-payment when finding a hospice.
19. Does the hospice provide any help to the family after the patient dies?
Hospice provides continuing contact and support for family and friends for at least a year following the death of a loved one. Some hospices also sponsor bereavement groups and support for anyone in the community who experienced a death of a family member, a school friend and the like.