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Family and friends

I feel like the woman in the movies who is tied to a railroad track and the train is barreling down the track, getting closer and closer.

- Josephine, whose husband was being treated for pancreatic cancer

There’s an elephant sitting in the room and nobody’s talking about it.

- Roberto whose elderly mother tried to protect her children by not talking about her colon cancer

People call all day long asking how Debbie is doing. Nobody ever calls to ask how I’m doing.

- Jane, Debbie’s partner of fifteen years

In a way, it is hard to talk about the specific ways cancer impacts on the family because there are so many different constellations of families with differing relationships. You may be the spouse or life partner of a loved one who is seriously ill; you may be the child, parent, sibling, or close friend. Sometimes, a grandchild, niece or nephew, or daughter-in-law becomes the primary caregiver for the person who is ill. Each of these relationships raises unique issues. For example, older parents caring for their ill adult child fear the loss of their child. A life-threatening illness in a child triggers an overwhelming sense of injustice in the parents. The well spouses or partners now must juggle most or all of the family responsibilities-household, finances, child care, work, etc. while caring for their ill loved one. Adult children may find it hard to put their own lives on hold while taking care of an ailing parent.

Discussing family issues that apply broadly is further compounded by the need to take into account a family’s ethnic origin, cultural values, religion, and attitudes toward illness. This requires careful and sensitive attention. In today’s world, there is greater diversity in the makeup of the nuclear family. Gay and lesbian couples represent an increasing number of households. Also, it is important to keep in mind that not everyone has a family when illness strikes, especially not older people, for whom friends may become surrogate families.

Despite these acknowledged differences, some universals still apply. The overriding question is: How do you deal emotionally and physically as a caregiver, not only performing your usual tasks in the family, but shouldering new responsibilities that are strange and unfamiliar? As caregiver you have multiple roles to assume in relation to supporting the patient. In a large study sponsored by the United Hospital Fund In New York, Carole Levine used focus groups to obtain data from a range of caregivers. Her report gives credence to the importance of caregivers. Information in the following sections is based, in part, on this report.

The caregiver as trusted companion

Little thought is given by the health care team to how hard it is to assume the role of trusted companion for an ill loved one. You must be outwardly empathic and supportive of the patient, while inside you are feeling heartbroken, having trouble controlling your emotional pain and despair. In studies of caregivers, about a third have significant distress, believing that they should have help for their own symptoms. For example, mothers of children who have gone through bone marrow transplants continue to have anxiety, depressed mood, vivid recall of the treatment, and dread that it could be needed again. These worries continue long after the child has recovered physically.

So it is important, as you set out to help your loved one along the cancer journey, to build in your own support system, which will ultimately benefit you both. Asking family members and friends to pitch in to give you a breather goes a long way and prevents you from becoming overwhelmed. You must feel able to cope yourself, to be able to support your loved one. Counselors are available who are familiar with the patient’s illness, for example social workers on the oncologist’s team. Inquire at visits to the oncologist about resources for yourself. If the social worker is unable to help you, he or she will refer you to someone who can.

A forgotten participant in the illness may well be the child or children at home. They need to be monitored for how they are coping and, if needed, referred for counseling. Nowadays, more groups exist for kids who have an ill parent.

Like many caregivers, you may be part of the cancer journey “from the beginning,” starting with the concern about a physical symptom that may be cancer and the office visit, when the diagnosis and treatment plan are presented by the doctor. It is important to listen carefully to be able to reflect later on what was said and to help the patient make important decisions. It is crucial to be there to give support and comfort if the news is bad. Your presence alone can make it easier for your loved one to hear bad news. Telling this special person in your life that “you don’t have to face this alone; I’ll be with you every step of the way” can be reassuring to the point of making the “impossible” seem possible. The simple task of accompanying the patient to treatment means driving or arranging transportation or missing work or personal appointments, but because it is absolutely necessary, it gets done.

Caregiving is often a balancing act between the psychological and the logistical. Besides giving emotional support, you may need to schedule appointments, pay medical bills, handle insurance, keep track of medications, and keep family and friends informed of the status of the treatment. It can be helpful to appoint another family member or friend to serve as an information clearinghouse for family and friends. You keep that one person informed, and everyone calls her or him. This simple arrangement frees you up to deal with the person who needs you most at this critical time. Your exact role will likely depend on how you and your loved one work together on problems. Couples who work together as a team will find it a frequent occurrence to turn to each other, asking “What should I do?”

Decisions about embarking on or changing a treatment plan need input from another person. The trusted companion role means reflecting on the options, considering them, and helping a loved one come to a decision. The more serious the decision, the harder this is. You must determine whether more information is needed, such as a second or third opinion. You as companion often must explore Internet resources, or call the National Cancer Institute (1-800-4-CANCER). Your loved one is likely to be upset, and too much information may increase his or her anxiety. You can serve as a helpful filter for the raw information, which is part of being the trusted companion.

This role can cause conflict with some doctors, who respect the patient’s autonomy and may be suspicious of the trusted companion as an intruder in the dialogue. Yet the reality is that few of us make important decisions totally alone. In our focus groups with doctors, they noted that patients often consulted their families when considering treatment on a clinical trial: “If the families are positive about a trial, it is likely the patient will agree. The families’ and friends’ influence on the decision is unquestionably very strong.”

Your role as companion becomes more difficult when your loved one is admitted to the hospital. “Being there” becomes critical to maintaining your loved one’s morale and providing a familiar presence. Levine points out that the family feels the need to be present out of a sense of loyalty and feels guilty if not present, which may not be understood by the medical staff. Intensive care units can be trying for the trusted companion, since the level of illness is high and visiting hours are severely limited. Staff can be supportive of the caregiver, but their attitude can turn sour when they feel pressed too much by a caregiver who insists on remaining at the bedside. Some staff aren’t comfortable with the family watching the mechanics of care in the intensive care unit, genuinely felling it only adds to the patient’s distress and to the family’s as well.

It is practical, during care in the intensive care unit, to appoint one family member to deal with the doctor and nursing staff, if possible. Large families should try to take turns visiting to avoid overwhelming the hospital staff and exhausting the patient.

When the patient is a child and the caregiver is a parent, the need to “be there” becomes even greater. We normally want to protect children from harm, and when illness strikes we feel the pain and guilt (even if irrational) of not having been able to protect them. As Karen Swymer, the lawyer, who was treated for sarcoma at the age of eleven, recalls her mother saying, “If I could do this for you I would.” One parent usually has to give up working when a child is treated for leukemia or one of the other serious childhood cancers. Being present as a buffer to the world of hospitals and clinics is a major role that provides reassurance and security to the child. Disruptions at home, including having less attention to give to siblings, cause additional guilt and problems. The need for the parent to control his or her emotions and be able to give emotional support to the child is a tall order: managing pain medicines and being watchful for changes that foretell worsening, while thinking about whether the child will survive or not: “Can I stand it? What can I do? How do I best comfort him?”

The caregiver as advocate

The family caregiver has a delicate but essential role as advocate for the patient, which can put him or her at odds with the medical staff. When the ill person is fully alert and assertive by nature, the family member’s role as advocate is minimal. But when the person is seriously ill, is a child or frail elderly person, has a language barrier, or is cognitively impaired, the family member becomes the central link to the care, the interpreter of the patient’s needs, and the person who feels responsible to ensure that the care given is appropriate. This role can be difficult and stressful, especially if the situation is colored by a prior negative hospital experience. In these situations you feel that you must be vigilant to ensure that the care is proper and attentive. The tension with the hospital staff can become intense if the staff members interpret your questions and concerns as distrust or criticism, and they may fail to understand your role as advocate.

Most hospitals today have a Patient Representative’s Office where you can voice complaints and receive a rapid review of the problem. This innovation has provided support for families, as a supplement to the traditional first-line support of social workers.

A similar situation can occur in an office visit. When a patient is too ill to keep up with the medications, the caregiver must attend the visits to clarify the medicines taken at home and on which schedule. It is best to bring in the bottles of medicine and to report details to the doctor that the patient may forget. Make notes of the doctor’s instructions concerning medications and signs that a problem may be occurring. Ask for a written daily calendar of what should be taken morning, noon, or night, or on an hourly schedule.

In the focus groups with patients and family caregivers, both spoke about how helpful it was when family members were welcomed in the doctor’s office. Patients liked it when the doctor knew family members by name and asked about children or those absent. One patient said: “They have always said, ‘Have the family come in.’ There are times when it is so crowded in those little clinic rooms that it looks like a Marx brothers movie. But I feel my family can ask questions, and we get the information we want.”
Not everyone finds it easy to get the information needed. Rhonda Price, whose husband jack was treated for an advanced melanoma, told a group of physicians: “My job is in management, so I see my situation as caregiver spouse as a management problem. I’m managing Jack’s illness, my family, my child care, and my work. The only way I can do this is if the doctors and nurses give me the information I need to do my job.”

Today, e-mail is a helpful resource you may be able to use for rapid communication with your doctors. Finding a time when you can speak with your doctor on the telephone is often frustrating, but e-mail allows for sending and receiving messages at will.

In our focus groups about doctor-patient communication, one particularly sensitive physician spoke about attending to family members’ emotional needs:

I find just sitting there with the family and just providing some support and letting them express their fears or letting them cry, or whatever, that seems to help. You really cannot take away the disappointment and sometimes there is not much you can actually say. Just being there, or just being quiet, is enough. Your presence with them seems to be helpful. Sometimes, I find in these situations that saying nothing is better than saying something.

I am reminded of David Spiegel’s paraphrase of the old admonition “Don’t just stand there, do something.” He says, “Don’t just do something, stand there.” There are times when less is truly more.

The role of advocate, like the role in decision making, can be complicated by problems in the family that relate to prior conflicts originating long before the onset of cancer. Dr. Marguerite Lederberg, a psychiatrist well known for her work with families and the ethics of care, feels that a critical intervention is calling a meeting of family members, patient, and key staff to clarify problems and conflicts that would otherwise simmer and grow worse under the stress of the increasing severity of illness. Such a meeting serves as a way to identify a dysfunctional family member or pattern of interaction so that counseling can be offered to ease the situation and provide longer-term help.

At times, the family wants information kept from the patient. Often this is because the family members have trouble handling it and project these difficulties onto the patient. I have seen this with adult children of elderly patients who insist, “Don’t tell Father, he won’t be able to take it.” Yet when I speak to the father, he might say, “Of course I know it’s cancer, but my children can’t accept it. They feel better thinking I don’t know.” Sometimes, I see the reverse situation: A patient doesn’t want the family to know the diagnosis. This is hard for the doctor, who wants to respect the patient’s rights about disclosure but feels the diagnosis would be better shared. Many physicians get around this problem by insisting on talking to the patient and family together so that they all hear the same information at the same time, can ask questions, and can discuss it among themselves afterward.

Views about revealing or withholding the diagnosis are powerfully influenced by culture, and providers must be sensitive to the origins of the requests. Patients from Russia, or Eastern Europe, come from a system where revealing the diagnosis and prognosis is still uncommon. As a family member you may have to explain to the doctor that telling the diagnosis to a patient is considered cruel in your culture, and try to arrive at a solution that you and the doctor feel comfortable with.

The family and cancer (Part 2)