Psychological and Medical Issues in the Final Days or Weeks

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By Roger C. Bone, MD, reprinted with permission

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Page Three of Three Pages

Home Care

The medical condition of a terminally ill person continually fluctuates. There will be some good days—days so good, in fact, hope will surface that he or she has had a remission or taken a small step to recovery. Unfortunately, except in a very small percentage of patients, such good days are only a blip on a chart that is inexorably getting worse. This downward movement has a tendency to pick up speed as the disease progresses. First, the patient's normal life style is interrupted when he or she first receives a diagnosis of terminal illness. It is as if someone applied the emergency brake and everything comes to an abrupt stop. Next, a patient may need to leave his or her job, have daily medical treatments, or limit physically and mentally taxing activities. Still, for a time after the initial diagnosis, a terminal patient can carry on some semblance of normalcy.

Eventually, though, they must decide on long term care options. The terminally ill person and his or her family usually have three choices: to seek hospitalization, to establish formal home care, or to seek respite in a hospice setting. Hospitals, as mentioned earlier, are generally reserved for specific treatments, such as surgery, or for crisis situations. Home care is often the first choice because it buys more time for the patient to be surrounded by a familiar environment, family, and friends.

Dr. Betty Davies and her co-authors in their excellent book Fading Away: The Experience of Transition in Families with Terminal Illness list four factors that determine home care success for the terminally ill patient. These factors are:

1. Able and Available Caregiver. Successful home care can only happen with full-time devotion to the patient by one or more family members and friends. This is around the clock duty. It is stressful and difficult work that will often be done in social isolation for the caregiver.

2. Comprehensive and Reliable Home Care Resources. The caregiver must have access to and know how to use or administer all medical equipment, medicine, and personal hygiene materials needed by the patient. A visiting nurse service should be engaged at least once a week or be on call to help with emergencies. Family and friends who are not directly involved must relieve the caregiver on a regular basis so he or she can pursue an independent life. In addition, they should recognize the caregiver's limitations. For example, a mother caring for a terminally ill child cannot be expected to cook meals, run errands, and shop for a husband and other children.

3. Patient's Physical Condition. The patient's condition cannot become too complex or overwhelming for the caregiver. There is a limit to what a lay person can do to maintain intricate medical machinery or consistently enhance the diet of a patient rapidly losing weight.

4. Suitable Physical Environment of the Home. Some residences or apartments are just not physically suited for home care. Houses with multiple stairs or bathrooms that are only on the second floor present obstacles that eventually cannot be overcome. Similarly, if a house or apartment is too small and/or the family is too large, extended home care may not be a reasonable alternative.

In summary, almost all terminally ill patients will receive some degree of home health care. Many times, families are so devoted to the idea of the patient staying at home that they manage to care for the patient to the very end. While this is a noble effort on their part, the decision to provide lengthy home care cannot be entered into lightly. Not everyone can be expected to live up to this high standard. A family member should not feel guilty because he or she is unable to quit working in order to help a sick parent, child, spouse, or sibling. In fact, a job may be essential in order to pay mounting medical bills. The fact remains, however, that successful home care often dominates the home life of family members.

Hospices

The modern hospice movement began in the 1960's in England through the efforts of a British physician, Dame Cicely Saunders. According to authors Maggie Callahan and Patricia Kelley in their book Final Gifts:

Dr. Saunders proposed a new way of caring for such [terminally ill] patients-a hospice like those of the Middle Ages, but organized as a peaceful place... [which] combined loving, compassionate care with sophisticated medical intervention that emphasized palliative care (relief of symptoms) rather than curative care (treatments or procedures intended to stop or reverse an illness or condition).

Today, the American hospice commonly concentrates on care for patients in the final stages of cancer. A few other diseases, most notably those associated with the heart, are also treated at hospices. Two other well-publicized terminal illnesses, Aizheimer's disease and AIDS, tend to have their own hospice-like settings but do not generally use the same terminology. Since the course of Aizheimer's tends to take a longer period of time, individuals are usually admitted to an institution similar to a nursing home for the elderly. AIDS, which is a blood born disease, requires a separate setting in order to cater to its patients' specific needs.

In all cases, hospices work on the principle of providing comfortable maintenance care in a pleasant setting for a person in the final stages of his or her terminal disease. Hospices are always "family friendly" and, indeed, depend on families to be present as much as possible for support. In addition, patients will meet, possibly for the first time, others who are going through the same personal tragedy. This sense of community is calming and relaxing for anyone who needs to be understood by another human being.

Most medium to large cities offer a variety of hospice services and locations. If you live in a small town or rural community, an effort should be made to find one close to home. Although the terminal patient may never stay in a hospice, for one reason or another, friends and family should investigate their options and arrange for your admittance in the early stages of the disease process. It provides a safety net when home care is no longer feasible and hospitalization is not possible.

It should be understood, however, that a hospice serves as a final destination. When a patient enters one, he or she understands that it is a necessary and concluding act. Sometimes, the amount of drugs taken to ward off pain is so great that he or she is only dimly aware of what is happening.

The emergence of the hospice movement over the past thirty years has proved to be a great advancement in the care for the terminally ill. Hospices permit peace, dignity and repose at a time when those qualities are vitally needed. They are the last place where the patient can say, "Please come here and help me."