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Patient's View

May I keep my own doctor?

Yes. In fact, your physician will play a crucial role on the hospice team. Your doctor will work closely with hospice to develop a plan of care that best meets your individual needs and those of your family and caregivers. In addition, the hospice nurse will keep your doctor regularly informed as to your condition and any changes which may be taking place.

What if my doctor hasn't spoken with me about hospice?

Your doctor may feel that your condition is not yet appropriate for hospice. However, it is wise to request information about hospice before you need it, so that you can understand your options and access appropriate services when you want and need them. Feel free to raise the issue with your physician, and if you would like additional information, speak with a hospice staff member.

May I continue with my treatments and therapies?

Hospice specializes in palliative, or "comfortā€¯ care. Therefore, treatments and therapies focus on controlling symptoms and managing pain, rather than attempting to cure. Some treatments, such as chemotherapy, can be either curative or palliative, depending on the circumstance. You should discuss with your physician which palliative treatments will be provided in your plan of care. Patients who wish to continue to aggressively seek a cure should seriously consider whether hospice is right for them at this point in time. Some members of the Hospice & Palliative Care Federation provide palliative care services for patients with life-limiting illnesses earlier in the course of their disease and who still may be in active treatment. Sometimes patients choose these services when the goal of care begins to transition from the cure to the relief of pain and suffering. These programs may offer pain and symptom management, assessment, consultation, or supportive services to the patient and family. They may be provided as a program of hospice, in cooperation with a home health or visiting nurse association, through a group medical practice, or within a hospital or extended care facility.

Will I be in pain?

Pain is not an inevitable side-effect of terminal illness. For more than 20 years, hospice doctors and nurses have dedicated themselves to providing the very best pain control and symptom management. With proper medication and management of an individual's changing condition, most of hospice patients can live alert and pain-free throughout the course of an illness.

Do you care for patients with any kind of terminal illness?

Yes. Years ago, hospice was associated primarily with a cancer diagnosis. However, in the last decade, hospice care has been made available to individuals with any life-limiting diagnosis, including: cardiac and respiratory diseases, neurological diseases, AIDS, liver disease, Parkinson's disease, Alzheimer's disease, dementia and others. If you are not certain whether your diagnosis is appropriate for hospice, speak with your doctor or a hospice in your community.

What if I get better?

It is possible that your condition may improve to the point where you no longer need hospice, or where it again becomes appropriate to seek curative treatment. In such cases, your hospice team can discharge you from the hospice program and help you to carefully transition to a different level of care. It is also possible that your life expectancy may exceed the six months anticipated when you became eligible for hospice. Patients discharged from hospice care can always be readmitted should your doctor find that your condition once again is appropriate for hospice care.

Will I become a burden on my family?

Many patients worry about this. You should know that hospice provides considerable support to your family, helping them to manage your care in an environment of trust and respect. Almost all families describe their hospice experience as one of the most meaningful in their lives - a time when they strengthened relationships and captured valuable memories.

What if my family is unable to care for me?

Hospice understands that some people do not have the option to stay with a family member who can serve as their primary caregiver. In such cases, you may choose to live in an extended care facility, or you may speak to your local hospice about arrangements to meet your needs. Several hospices offer services in their own residences. Hospice will work with you to address your unique situation to ensure your safety and well-being.

How often will I see my hospice team?

The plan of care developed by your physician and hospice will determine the frequency of scheduled visits from the various members of the hospice team. This plan will evolve to meet your changing needs. In addition, you can reach a hospice nurse by telephone around-the-clock, and emergency visits will be provided whenever necessary.

Will my personal beliefs be respected?

One of the founding philosophies of hospice involves an abiding respect for each individual's unique values. All hospice team members appreciate diversity in cultural heritage, faith, spirituality and lifestyle. If requested, hospice chaplains and social workers can provide an extra measure of support, offering spiritual comfort with an attitude of openness and acceptance.

How can I let my family know my informed health care decisions?

You can help your family to understand your wishes by preparing them in advance. You may wish to discuss your choices with your family, friends, doctor, clergy or others close to you, so that you can gain a clear sense of the options and decisions which lie ahead. In Massachusetts, the Health Care Proxy law gives individuals a way to have one's values and wishes regarding end-of-life decisions upheld if the ability to decide for oneself is lost. Health Care Proxy forms are available through Massachusetts Health Decisions, PO Box 417, Sharon, MA 02067.

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