Hospice Care—What Is the Goal?
“My 94-year-old mother, who had Alzheimer’s disease and heart failure, had become bedridden. She refused to eat and resisted our attempts to awaken her. At the hospital I was told about the ‘altered state of consciousness’ that she was experiencing. I wanted to care for her at home, but I needed help.”—Jeanne.
TERMINAL ILLNESS presents a challenge, not only for the patient but also for the family. Relatives face a difficult decision. Should the ailing one’s life be prolonged at all costs, even if that includes needless sustained suffering? Or should they strive to maintain the best quality of life for their loved one in the time that remains?
For many, hospice care is a viable option. It is defined as care and attention to the emotional, spiritual, social, and financial needs of terminally ill patients. The goal is to alleviate the suffering of those who are terminally ill. Hospice is now available, even if to a limited degree, in about half the countries of the world. For example, because of the growing number of HIV/AIDS and cancer patients in Africa, most countries there either have such programs or are now taking steps to implement them.
The Goal of Hospice
Some patients may feel that enrolling in a hospice program is equivalent to giving up on life. Family members may feel that placing a loved one in hospice is tantamount to waiting callously for him or her to die. However, hospice is not simply a passive resignation to the inevitable. Rather, it can help the patient to enjoy a dignified, meaningful life in the company of loved ones for as long as possible, while controlling pain. It can also give the patient’s family a chance to comfort and support their loved one for as long as that is needed.
Although hospice cannot cure terminal illness, it can address curable complications, such as pneumonia or bladder infections. If circumstances change—for example, if a cure is developed or if the disease goes into remission—the patient can return to regular treatment.
Advantages of Home Care
In some countries, hospice care is given only at a health-care facility. In other places, though, family members are able to provide care at home. With home care, the patient can participate in family life. Home-based care also fits the cultural needs of many countries, such as Uganda, where the custom is for family members to care for the sick and elderly.
Under the home-based hospice program, caregivers often have at their disposal a support team, perhaps including a doctor, nurses, aides, and a social worker. Such professionals can educate caregivers on how to keep the patient comfortable and explain what they can expect during the dying process. They also work along with the wishes of the patient and the family. For example, if the family wishes, the hospice workers will avoid unnecessary diagnostic tests or tube feeding when the patient can no longer process food.
Dolores and Jean are caregivers at home for their 96-year-old father. Because of his deteriorating condition, they appreciate the assistance that they receive. “An aide comes in five days a week to help us bathe Dad,” says Dolores. “The aide will also change Dad’s bed and help him with his grooming if we want her to. A nurse comes once a week to take Dad’s vital signs and refill prescriptions. And the doctor visits about every three weeks. If we need them more often, they are available 24 hours a day.”
Having professionals on call is a vital part of hospice, as these skilled men and women can supervise medications and ensure that the patient is pain free and at the same time as alert as possible. They can also administer oxygen therapy. The assistance of these professionals gives the caregiver and the patient confidence, eliminating the fear of suffering from severe pain or other distressing symptoms during the end-of-life phase.
Hospice personnel recognize the need to preserve patients’ dignity and treat them with respect during all phases of care. Martha, who worked in hospice care for more than 20 years, says: “I came to know the patients, as well as their likes and dislikes, and I tried to help them enjoy to the extent possible their remaining time. I would often feel a great attachment to them, and some I couldn’t help but love. True, some patients with Alzheimer’s or another form of dementia would become combative while I was assisting them. They would try to strike, bite, or even kick me. But I always tried to remember that this sort of conduct was not the person. It was the disease.”
As to the satisfaction she derived from supporting the caregivers, Martha says: “My assistance helped them not to be so overwhelmed with caring for their loved ones. Just knowing that the hospice team was sharing the load brought them comfort.”
If hospice care is available where you live, it can be a realistic, compassionate alternative to a hospital or a nursing home. Jeanne, quoted at the outset, is glad that she chose hospice care for her mother. She says: “Mother was able to continue at home surrounded by family, who gave her physical, emotional, and spiritual support, while at the same time, she was provided with nursing care and the medications necessary for her comfort. Without exception, the hospice personnel were professional and compassionate. Their advice and expertise were invaluable. I believe Mother would not have wanted any other type of care.”
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Having professionals on call is a vital part of hospice care
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“We Were Able to Be With Her”
Isabel, a woman in Mexico whose mother fought breast cancer for 16 years until it metastasized and became untreatable, relates: “My family and I were very concerned that Mother would suffer. We prayed that she would not have to endure the severe pain that many terminal cancer patients have suffered before dying. A doctor here in Mexico who specializes in palliative care was the answer to our prayers. She visited once a week, provided appropriate pain medication, and gave us precise, easy-to-follow instructions about its use and how to care for Mother. It was comforting to know that we could call the doctor at any time, day or night, and that she would come. What a blessing it was to see our mother pain free and peaceful during her last days, even enjoying the little food she could eat. We were able to be with her, right here at home, until she passed away in her sleep.”
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When the End Is Imminent
Keep bedsheets clean, dry, and free of wrinkles. To prevent bedsores, change the patient’s position regularly, and change undergarments or adult diapers as needed if the patient is incontinent. Bowel function can be maintained by suppositories or saline enemas if needed. Food and water are not necessary to prevent suffering if the end is close. Keep the mouth moist with chips of ice or wet swabs and lip salve. Just holding the patient’s hand is comforting, and remember that he or she may be able to hear to the last.