WHAT YOU SHOULD KNOW:
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 tries to give the patient the best quality of life in physical, psychological (mental), social, emotional, and spiritual ways. It aims to prevent and relieve the patient's suffering, and improve his quality of life during his remaining days. This program helps a dying person feel comfortable and free from pain until the time of his death. With hospice, comfort is provided rather than life-prolonging measures. Patients who choose to leave the hospice program to seek life-prolonging therapies may choose to join again if their goals change. 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. Hospice services may be provided either at home, within hospitals, or in free-standing health centers or facilities. These services are available 24 hours a day, every day of the week.
AFTER YOU LEAVE:
- Keep a written list of these medicines, the amounts, and when and why the patient needs them. Bring the list of his medicines or the pill bottles when you see his caregivers. Learn why the patient takes each medicine. Ask for information about the medicines. Do not let the patient take any medicines, over-the-counter drugs, vitamins, herbs, or food supplements without first talking to caregivers.
- Make sure all medicine is used as directed by caregivers. Call his caregiver if you think the patient's medicines are not helping or if you feel he is having side effects. Do not let the patient quit taking his medicines until he discusses it with his caregiver. If the patient is taking medicines that make him drowsy, do not let him drive or leave him alone.
Keep all appointments. Write down any questions about the patient's condition, treatment, or care. Ask these questions at the next caregiver visit.
Activity and rest:
The patient may need to rest in bed and get plenty of sleep. He may want to nap during the day. Tell the patient's caregivers if he has trouble sleeping.
Caring for the patient in the hospice:
A dying person may fear being alone, becoming a burden, or having pain. He may face these fears by getting relief from pain, nursing care, and the support of others. With the help of his family and caregivers, the patient will feel peaceful during the last phase of his life. The following are more ways to care for a patient in hospice:
- Keep the patient company. Always be willing to listen to the patient, especially if he talks about his life. Do things together such as watching television and reading books, or just stay with the patient.
- Help the patient to keep his hopes up and keep a positive yet realistic outlook. Help the patient to manage stress, and be relaxed and comfortable. Work together with people whom the patient can trust to help him get through the hard times.
- Learn more about the patient's condition. Knowing information about the patient's condition can help you better understand what he is going through. Many people want to be included in their treatment and care plan. Avoid holding back information that you think the patient should not, or does not want to hear. Work with caregivers and other people to help the patient.
- Respect the patient's feelings, other emotions, and need for privacy. Let the person express fears and concerns about dying, such as leaving family and friends behind. Reassure the patient that you will follow and honor his advance directives, such as living wills.
Counseling and emotional support for the patients are given as part of hospice and palliative care. They are free to express their emotional needs to someone willing to listen. A caregiver may talk to the patient, his family, friends, or those who take care of him. Patients and families may join support groups, or meet other patients and families in similar situations. Ask caregivers for more information about bereavement and support groups.
A special power of attorney may be given to someone who is assigned to take care of the patient. The patient may choose a lawyer and a family member who may take care of his directives, last wills, or belongings.
For support and more information:
Accepting that someone needs hospice services may be hard to do. You 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 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
CONTACT A CAREGIVER IF:
- The patient cannot eat, drink, or take his medicines.
- The patient cannot make it to his next meeting with his caregiver.
- The patient has new signs and symptoms since the last time he visited his caregiver.
- You or the patient have questions or concerns about his condition, treatment, or care.
SEEK CARE IMMEDIATELY IF:
- The patient feels like hurting himself or someone else.
- The patient feels pain that is not relieved even by taking pain medicines.
- The patient feels that he cannot cope with his condition.
- The patient has problems sleeping.
- The patient has trouble breathing, chest pain, or a fast heartbeat.
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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.