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Family and friends (Part 2)

The family member as home caregiver

Current health care policies require hospitals to discharge patients “sicker and quicker,” solely on the basis of the economics of managed care, thus making families an indispensable, but formally invisible, piece of health care. In the United States, there are now about 22.4 million families caring for their chronically ill loved ones at home, underscoring the public health problem that this represents. Today, you are expected to provide not only the emotional support expected of families for millennia, but also a remarkable range of services, including the use of high-tech equipment that we would have believed not possible a decade ago, assuming that only highly trained professionals could handle that level of technology. Not only must you assume this responsibility, but you may be given little instruction on how to do so. Under these circumstances, it is perfectly normal to have enormous anxiety about whether you might be doing harm. It becomes crucial that you have a good line of communication with your loved one’s physician. This may be through a nurse who is the frontline person and available by telephone; her close work with the doctor ensures you have access when you need it.

Carole Levine’s study showed that “more than 25 million family caregivers are struggling with the fragmented, inflexible, and increasingly complicated collection of institutions and agencies called ‘the health care system.’” A recent survey by the American Association of Retired Persons (AARP) estimated that one in four households in the United States is involved in family caregiving. Levine says, “It sometimes takes a cross between heroism and martyrdom to survive as primary caregiver today.” You may feel some of both on some days. This issue has not yet been addressed at a federal level, and caregivers often function without benefit of technical or psychological support from medical and social agencies. There remains little quality control and oversight of home care services; economic gain has frequently been a higher incentive than quality of services rendered.

Clearly the benefits of care at home weigh in heavily against the liability. The patient is in his or her own private world of familiar walls, furniture, and bed. Friends may come and go; there is a feeling of greater independence. The benefits for the family are daily, informal interactions; more control of care; and sense of satisfaction and pleasure at being able to provide care for a beloved family member or friend.

However, home care is not best for every patient or every family. Studies of palliative care are showing evidence of “caregiver burden,” the stress that can be put on families when they care for ill relatives at home. These obligations are superimposed on ordinary responsibilities. As a caregiver, you must:

  1. Maintain the stability of the home and family. This includes attending to the daily tasks of meals, household chores, arranging for child care, and other normal activities in addition to caregiving.
  2. Ensure family income is maintained. Depending on the level of care the patient requires, you may need to quit your job or take leave from work to provide care for the ill person at home. Employers vary in their tolerance and support for work leave or absences; however, research suggest that overall income goes down when someone in the family is seriously ill. Reduced income and extra costs take a toll on funds available for other family needs, like children’s schools and saving for college education. According to the AARP report, caregivers’ out-of-pocket expenses related to groceries, medicines, and care-related costs average $171 per month, which is an estimated nationwide expenditure of $1.5 billion per month, or $18 billion per year. The economic value of informal (unpaid) caregiving, if it were reimbursed, would be 18 percent of total national health care spending.
  3. Seek the services of a part-time or full-time companion or aide. The cost of a full-time paid caregiver at home varies from $25,000 to $50,000 per year, restricting their availability to families with higher incomes. Medicare currently supports four hours per day, three days per week, for a home health aide. Even hospice care provides only twenty hours per week of care. In homes with lower incomes and limited resources, the burden usually falls to mothers or adult daughters, many of whom have small children and who also work. The AARP survey found a higher percentage of homes with a chronically ill family member among minority, underserved families.
  4. Manage the patient’s physical care. As discussed earlier, families must now provide much of the patient’s physical care at home. Studies have shown that this is extremely stressful for the family caregiver, who must meet the demands of nursing care without having any medical or nursing skills or training. Discharge planning at hospitals is often done at the last minute, without adequate instructions or training in how to manage equipment or give medication. Rhonda Price, Jack Price’s wife, highlighted this problem for me, pointing out that medical staff often aren’t aware of what they ask of the family. She remembered that once Jack was discharged during a change of nursing shifts. Rhonda said, “I’m double-parked in front of the hospital to pick up my husband. I’m trying to deal with taking home, is fine in concept, but it doesn’t always work out the way it was intended.
  5. Tolerate the “medicalization” of home. The good news is that a broad array of “high-tech” equipment can now be brought into your home to control symptoms. IV fluids for hydration, total parenteral nutrition (TPN), pumps for pain control, special beds, devices to move the patient from bed to chair, oxygen inhalation, all these contribute to making the patient far more comfortable at home. The bad news, however, is that, in a sense, you have been invaded by the hospital’s moving into your home. The sanctuary you call home now contains foreign objects and flow of individuals from outside who must monitor the equipment to keep it working. The much-appreciated intimacy you looked forward to on getting your loved one home becomes constrained by these forces.

The symptom that causes the most stress is pain. The caregiver is anguished at seeing a loved one in pain, and yet is fearful of giving too much medication, fearing it could hasten death. This dilemma is agonizing for the family, and it is a frequent reason for re-hospitalization. Managing intravenous lines or catheters, oxygen, and the patient-controlled analgesic (PCA) pump can be overwhelming. Shortness of breath and anxiety are disturbing and frightening.

Dr. Sherry Schachter, a nurse, psychologist, and grief counselor at Memorial Hospital who has specialized in home care, notes that the level of physical exhaustion of the caregiver correlates with the level of illness of the patient. She feels families underestimate the toll taken by the physical care, such as keeping the bedclothes and room clean, dealing with the mountains of daily laundry, making special foods that appeal or are required by a certain kind of diet (or that can be eaten easily by their loved one), and staying up with the patient during sleepless nights, often with little support. It is little wonder that the feeling of being alone with the problem is so common.

One wife whom Sherry Schacter came to know in a Home Support Program was pleased to have her husband’s care at home. Her husband had a twenty-four-hour nurse, a feeding tube, an intravenous line for antibiotics, and an infusion pump for receiving analgesics. However, she felt totally excluded from the bedroom, which she called their “MINI-ICU,” and she mourned the loss of the chance to share closeness with her husband in the remaining time they had together, which she had wanted so much.

Carole Levine, herself a caregiver to a chronically disabled spouse, voiced the problem this way:

Professionals call us “informal caregivers” to distinguish us from paid workers, implying that there is something casual and nonessential about our care. Because we love the people we take care of, we do not ordinarily see ourselves as anything but a spouse, child, sibling, partner, or friend. In fact, we take care of the basic health, social, and emotional needs of people who are disabled or chronically or terminally ill, and who are only sporadically hospitalized. Sometimes, we have to turn our homes into something like small hospitals, crowded with high-tech equipment.

Attention to the problem of home care could prevent hospitalizations and nursing home placement. The United Hospital Fund report noted several changes that could make a difference:

Discharge planning should be made a process, not a single-shot event, with better training of families for the tasks they must do at home. Better education and communication with staff in the hospital and continued contact at home with medical staff would be invaluable.

Support programs should be made available for caregivers including counseling, general support, and respite sources (substitute caregivers for brief periods). When the caregivers surveyed by Levine were asked what they wanted for themselves, they answered: “Someone to call to who understands what I’m going through.” “Someone to call when I have a question.” “A day off.” “A kind word from a doctor, nurse, or social worker.” According to the AARP survey, when caregivers were asked how they coped, they responded they used prayer, talking with friends, exercise, and hobbies.

Accountability needs to be established for quality of home care services.

There is a great need for national attention to the plight of families of the chronically ill. Some pilot efforts are occurring in some states to provide compensation for the care given at home, recognizing that this “invisible” part of health care is buckling without help. Some experts contend that if families stopped providing care, the health care apparatus in this country would collapse. Tax breaks, additional home health aide hours, respite care, and other initiatives by the federal government are needed to address the problem.

As illness brings new roles, each family forms its own internal, implicit agenda, assigning roles to each member. Tasks include earning a living, attending to household chores, caring for the children, and setting the social agenda. Illness turns the status quo upside down. Often the breadwinner can’t work, and either must struggle with the new role of being ill, dependent, and cared for by the other partner, or with putting work on hold to provide care. Or the caregiver must now become the breadwinner in addition to performing his or her normal tasks. And the caregiver feels it is important not to show anger at the added role so that the ill person does not feel guilty. The delicate balance tips at times, and frustrations and conflicts erupt.

Children may not get the affection and attention they need and normally would get. They feel anger, fear, and guilt that they may have contributed to the family’s current situation in some way. They may be fearful not only that the ill parent will die, but also that they may eventually be abandoned if anything happens to the well parent. School performance often plummets, behavioral problems arise, and the well-being of all family members is disrupted. Often, members of the extended family, when available, join the household to fill in the gaps in services. Grandparents may be pressed into service at a time when they are ill-equipped to take on responsibilities of child care. Intergenerational conflicts may appear in the context of illness. The world of health is replaced by that of illness, and it affects the dynamics of the whole family. The more serious and chronic the illness and the more uncertain the outcome, the greater is the disruption for all.

Advanced and chronic illnesses also mean greater involvement with the health care team. In a strange way, relations with the doctor, nurse, and social worker, especially if the patient is a child or adolescent, become so important that these professionals become like an appendage of the family. Their reactions and their views of how things are going each day become yardsticks of “how we’re doing.”

When illness abates and treatment ends, roles must change again, and that can stir up trouble as well. The ill person roars back to show renewed health and vigor, proudly saying, “I’m a survivor”, to the horror of those who have watched through the illness and fear a relapse. Caregivers may become fearful and angry that the sacrifices they have made will be squandered in the effort of the new “ex-patient” to too rapidly regain a normal life. They may try to overprotect and keep the survivor under wraps longer than is necessary.

At the same time, well family members may fall into the new roles so completely that they don’t welcome losing them. Strains again arise as a new equilibrium is sought. Counseling for the family can help them sort out what has happened. Dr. Jamie Ostroff, psychologist, and Dr. Peter Steinglass, child and family psychiatrist, have found it helpful to bring several families together to discuss their problems jointly after their adolescents’ cancer treatment is over. Parents talk together while the adolescents meet alone, and then they all meet together. Sharing experiences and hearing one another’s solutions has proved helpful for recovering the health of the family after illness. This approach places the illness in the larger context of the families’ lifelong experiences. It becomes part of the family myths and stories: “what it was like when Joanie was sick.”

The family and genetic risk

Dealing with genetic risk is a new aspect of a family’s psychological burden that has emerged in the last decade. The family is concerned that its well members will develop the same cancer as the one who is ill due to a higher genetic risk. You have probably heard of BRCA1 and BRCA2, genetic mutations that increase the risk of breast and ovarian cancer. Women who develop breast cancer often immediately begin to feel guilty and anxious that they have put their daughters at risk. They have the double worry of their own breast cancer and the possibility of their daughters’ developing it. In point of fact, the proportion of new breast cancer cases each year with a genetic origin amounts to about 5 percent; however, the information has been so widely circulated, especially as genetic testing become available, that women whose relatives have breast cancer are highly fearful about developing the disease. They often say, “I’m a walking time bomb. It’s only a matter of time.” Fortunately, genetic testing usually reduces anxiety because women’s imagined risk generally exceeds their actual risk. In general, close surveillance through a special clinic or by a vigilant gynecologist is adequate for care.

Genetic counseling and testing for BRCA1 and BRCA2 are available today to clarify for a woman whether or not she is a carrier. BRCA1 carries primarily a breast cancer risk. Women are often advised to take Tamoxifen, which reduces breast cancer risk. Removal of both breats as a preventive measure is drastic and is rarely recommended. BRCA2 carries the risk of both breast and ovarian cancer. Removal of the ovaries may be recommended when the risk of ovarian cancer appears high.

The genetic information, whether it is positive or negative, is often helpful in resolving the uncertainty. Testing positive (when the genetic marker is found) permits closer surveillance by mammography, clinical examination, and breast self-examination to pick up the earliest signs of disease. It also is a call to alert daughters to begin mammograms at an earlier age. Psychologist Dr. Kathryn Kash has counseled these women and found that group therapy, in which those at risk share their fears and their coping techniques, reduces anxiety. It is important to control their anxiety since Kash found that those who had the highest anxiety had trouble doing their breast self-examinations and getting mammograms.

Colon cancer also clusters in families. One familial form, the Lynch syndrome, has a high frequency of developing at young ages. Genetic counseling is essential. The more common form of genetic risk is handled by regular colonoscopies to identify polyps, the removal of which prevents the development of colon cancer. Families with a history of colon cancer need to make their members aware of it and begin colonoscopies at an early age.

It appears that prostate cancer also carries a genetic risk, and regular digital examinations and PSA testing should begin by age forty in men in these families.

Genetic testing for cancer is a rapidly developing field. Use your knowledge of your own family history to guide you in cancer surveillance to ensure early diagnosis of any cancer that might develop. Genetic testing will likely become more common, but at present it carries several liabilities. First, results are often inconclusive. The second liability relates to health and life insurance. Information that should be kept fully confidential can sometimes be found out, including the fact that a person took a genetic screening test. A positive test can lead to discrimination in obtaining medical insurance.

From a psychological perspective, people have tolerated hearing results without serious problems. When one person in a family is tested and found positive, the issue arises of informing other family members and suggesting that they be counseled and tested. Family conflicts can ensue when there are differences in opinion about the value and appropriateness of testing.

What is positive about being a caregiver?

Our knowledge of the stresses and difficulty in coping has largely focused on the negative side of home caregiving. But there is a strong positive side to being a caregiver for a loved one who is ill. In a study of partners, one of whom had AIDS and one of whom was the caregiver, psychologist Dr. Susan Folkman showed that good feelings coexist with the sad, painful feelings. Even while going through the extreme stress of caring for a critically ill partner, caregivers felt a deep sense of closeness that was engendered by providing hour-by-hour physical care. They also felt the satisfaction of being able to show love in this way. The same picture emerges when the caregiver is a family member or friend of the patient with cancer. “As hard as it is, I wouldn’t have it any other way,” is a frequent expression. The awareness that “I’ve done all I could do” helps alleviate the normal pain and guilt that accompany grief after loss. Positive feelings accompany the effort to improve the patient’s comfort, despite the illness.

In exploring this issue, Folkman asked the caregivers: “Tell me something that happened that made you feel good, that was meaningful to you and helped you get through the day.” Virtually all the participants could clearly recall positive events that occurred in the midst of the severe illness of the partner. The events were ordinary, like a dinner, a word of appreciation from another, going to a movie. One recalled looking at a beautiful flower in a street stand and noticing how it stood out in an instant flash, creating a special moment for both. What made these ordinary events special was that the caregivers felt more connected and cared about, and they felt good about themselves and what they had done. It was an emotional “breather” from the daily chores.

The underlying theme of having coexisting positive and negative thoughts and emotions was the search to find meaning in the face of all the negatives inherent in the situation. The meaning varied for the men studied. Spiritual and religious beliefs were a source of positive meanings, especially beliefs of reunion after death or some comforting and peaceful understanding of death. The negative feelings of distress were sprinkled heavily with positive ones, contributing to the overall sense of a “job well done.”

This search for meaning is a task for family and friends and especially the primary caregiver of a person with cancer. They experience the cancer illness of a loved one with a range of emotions and activities, including empathy, comforting as much as possible, sharing decisions, being advocates, and providing physical and emotional care. Despite role changes, stresses, and distress, the positive feelings of “being there when it counts” and the sense of doing all one can for a loved one more than outweigh the stress of caregiving.