What is hospice?

Hospice is a special program that gives care to people who are near the end of life. This program may also include the patient's family, friends, and other caregivers. Hospice focuses on preventing or relieving suffering. With hospice, comfort is provided rather than life-prolonging measures. Hospice upholds life and does not speed up or postpone (delay) death. It tries to give the patient the best quality of life in physical, psychological (mental), social, emotional, and spiritual ways. Hospice services may be provided either at home, within hospitals, or in free-standing health centers or facilities. Hospice services are available 24 hours a day, every day of the week.

What is palliative care?

Palliative care is usually given to those who have been diagnosed with any type of terminal illness. A terminal illness is an active and worsening condition which cannot be cured and is expected to lead to death. Palliative care may also be given when caregivers are unsure if someone will get better or worse, or if it seems that a person may live for several months or years.

Why might a person need hospice services?

Hospice services aim to improve the patient's quality of life during his remaining days. This may also help a dying person feel comfortable and free from pain until the time of his death. Hospice services are usually given to patients who may be diagnosed as having a shorter time to live. Some hospices take care of patients at any stage of terminal illnesses. These include cancer, dementia (problem with memory and understanding), heart, lung, or kidney disease, or any other condition. Hospice helps the patient accept his condition to relieve his suffering and be at peace with himself. The patient's family or friends, or those who are coping with grief may also benefit from hospice services. They are helped to become prepared for the patient's passing, and get support through sad times after his death.

What details should I know about hospice?

  • Patients are given quality and expert medical care. A hospice team provides high quality care for patients in the hospice program. The hospice team includes different caregivers who are highly skilled and trained.

  • Patients can quit or change their program if they want to without losing their hospice benefit. Patients may continue to receive services as long as they meet the conditions needed for hospice care. Patients who choose to leave the hospice program to seek life-prolonging therapies may choose to join again if their goals change.

  • Patients can be admitted to the hospital, and still stay in the hospice program. Any hospice patient can be admitted to a hospital. This occurs anytime a symptom cannot be managed by the hospice care team in the home setting. The patient may also be admitted to the hospital to give his caregiver a rest from the stress of care giving.

  • Patients can join in research projects while enrolled in hospice. Hospice patients can join in research studies if they want to. The hospice ethics and research groups usually study a research project before a patient joins it. They will learn about how the project may affect the patient, family, and hospice staff and discuss it with them.

  • Patients enrolled in hospice keep their primary doctors. The patient's primary doctor will direct and approve all the patient's care.

  • Patients enrolling in hospice can choose what they want to happen if they need to be revived. Hospice accepts patients for home care who still wants to be revived (kept alive) if they have a cardiac or respiratory arrest. A cardiac or respiratory arrest happens when the heart or lungs stop working.

  • Patients do not need a live-in caregiver to be enrolled in hospice. Hospice programs may be given to patients who live alone. Special safeguards, such as lock-boxes and daily phone contact, are provided which can be used in emergencies.

What does hospice services include?

There are many types of hospice care and services which may be given to a patient. These may also be offered to his family, friends, and carer. A carer is someone who is caring for the patient. The following are types of care that hospice services may give:

  • Physical care: The hospice may control pain and other symptoms that cause discomfort or distress. Personal care needs, such as bathing and getting dressed, are also given. Therapies, such as physical, occupational, or speech may also be given as needed.

  • Emotional and psychological care: Counseling and emotional support for the patient and those close to the patient are given.

  • Respite care: Respite-care services give the patient's family, carers, and other caregivers a break from care giving.

  • Social care: Social workers and other caregivers arrange to find answers to questions about practical, financial, or other concerns. Answers to questions about insurance benefits or payment for hospice services may also be given.

  • Spiritual and cultural care: Hospice provides spiritual care depending on the patient's and family's spiritual needs and religious beliefs. These may include doing a special ceremony or ritual. Hospice also helps with memorial services and funeral arrangements.

  • Others: Equipment, such as an electric bed, a special mattress or a wheelchair may be provided. Hospice may also provide other medical supplies which a patient may regularly need. These include bandages, catheters, and urine protection pads.

Who provides hospice care?

Hospice care may be given by a team of committed and well-trained caregivers and support staff. The hospice team may include doctors, nurses, home health aides, social workers, chaplains (spiritual counselors), and volunteers. Other caregivers, such as pharmacists, nutritionists, and therapists may also be a part of the hospice team. They help the patient live his final days with dignity and with as much comfort as possible. They try to give the patient the best hospice and palliative care he can have. The hospice team also includes the patient himself, as well as his family, friends, and other loved ones.

What are advance directives?

Advance directives are spoken or written legal and medical care instructions (directions) made by the patient. These decisions are made beforehand in case something happens and the patient becomes unable to decide for himself. Examples of advance directives include living will, organ donation, and cardiopulmonary resuscitation (CPR) attempts. Without advance directives, someone who has permission will make these decisions for the patient. Ask caregivers for more information about advance directives.

What is end-of-life care?

End-of-life care is given to patients whose conditions have worsened and may be nearing death. This type of care is mainly to provide comfort to the patient while maintaining his dignity. It may help a dying person face his fears of being alone, becoming a burden, or feeling pain. Every aspect of care, including the decision making for end-of-life issues will involve the patient and his family. Caregivers provide treatment and care according to the wishes of the patient or family, as well as his values and beliefs. Issues, such as organ donation and autopsy, will be talked about with respect, sensitivity, and concern. The patient's family or friends, will be prepared for the patient's loss, and will be supported through sad times after his death.

How can family and friends be involved in hospice care services?

Hospice care services involve the patient's family, friend, or anyone who cares for the patient. The family plays a role in planning for the patient's care, and may help with decision making. It is important that the family understands the disease, including its symptoms and effects. It is also important that they know the treatments, their side effects, and how the patient's function will be affected. Hospice services help the patient's family and others support the patient. They are taught how to take care of the patient the best way possible and what to do in certain situations. At the same time, Hospice care services make sure that the family and friends are also taken care of. Hospice care services check on them regularly to see how they are coping with the patient's condition.

What is bereavement?

Bereavement is a feeling of sadness or loneliness due to a loss or death of a loved one. When someone dies, the people who were left behind may feel different for a while. They may cry a lot, feel angry, guilty, worthless, hopeless, helpless, or confused. Counseling and emotional support for them are given as part of hospice and palliative care. They are free to express their emotional needs with someone to listen. Patients and families may join support groups, or meet others in similar situations. Ask caregivers for more information about bereavement and support groups.

Where can I find support and more information about hospice services?

Accepting that someone needs hospice services may be hard to do. Your or the patient may feel angry, sad, or frightened. The patient may blame himself and think he has done something wrong. These feelings are normal. Talking to the patient may help him discuss his feelings. The patient, his family, friends, and other carers may also want to join a support group. This is a group of people who may also have hospice services or know someone who does. Contact the following for more information:

  • National Hospice & Palliative Care Organization (NHPCO)
    1700 Diagonal Road, Ste 625
    Alexandria , VA 22314
    Phone: 1- 703 - 837-1500
    Phone: 1- 800 - 658-8898
    Web Address: http://www.nho.org

Care Agreement

The patient has the right to help plan his own care. To help with this plan, he must learn about his condition or situation. He can then discuss options with his caregivers, including his family. Working with them will help to decide what actions will be taken, and when hospice services should begin. Other possible care and treatment may also be planned and given. The patient always has the right to refuse actions or treatment.The above information is an educational aid only. It is not intended as medical advice for individual conditions or treatments. Talk to your doctor, nurse or pharmacist before following any medical regimen to see if it is safe and effective for you.

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