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Family and friends as caregivers
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A large number of dying cancer patients are cared for at home by informal caregivers — spouses, adult children, friends or more distant relatives. The care these individuals provide is unpaid and goes beyond customary and normal support provided in social relationships. These individuals are involved in medical decision-making, provide assistance with activities of daily living and carry out pharmacologic and nonpharmacologic treatment recommendations. The care provided amounts to billions of dollars; many informal caregivers must stop working and a number of families lose all or most of their savings.
Without the support of these individuals, it would be impossible for these patients to remain at home. Family members and friends willingly take on this role, although there is a tremendous physical, social, psychological and financial cost to them. Although most find the caring rewarding and a small percentage find it burdensome, a large number find it equally rewarding and burdensome.
Being a caregiver
Because the roles and tasks of each informal caregiver are diverse, there must be an individualized assessment of stressors and the caregiver’s response. Primary stressors include providing assistance with activities of daily living, taking on a decision-making role, performing medical tasks often with no formal medical or nursing training, and providing transportation and household maintenance for the patient. Secondary stressors include family role conflict, work role conflict and financial strains.
The informal caregiver goes through several stages during the patient’s trajectory through the disease process. First he must deal with the onset of the illness when cancer is diagnosed. Then, acute events (ie, hospitalizations, intensive care unit stays) must be dealt with. When the patient reaches the terminal phase, the informal caregiver must often learn yet an entire new set of skills to care for the patient and keep them comfortable. Finally, informal caregivers must deal with the death of the patient, the loss of their caregiving role, and the bereavement associated with both. For caregivers of patients with cancer, they must deal with the fear of the cancer and its spread, helping the patient deal with the emotional impact and managing disruptions caused by the cancer diagnosis.
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Educating caregivers
Clinicians are in a position to help support these informal caregivers by providing information and education. Adequate information about the patient’s diagnosis, prognosis and disease trajectory, including how the patient may die, allows the patient and caregivers to make informed decisions about medical care as well as place the diagnosis in the context of their life. Being well informed seems to help caregivers by allaying anxiety provoked by unrealistic fears and uncertainty.
There may be patients who do not wish to disclose their personal health information with caregivers; in these cases one must work with the patient and explain the benefits to both them and the caregivers of having everyone well informed. Alternatively, when working with the caregivers, withholding information from the patient to protect them should be discouraged. Withholding information from either party can lead to mistrust and impaired communication during a time when mutual support is most needed. Although it is appropriate to meet with the patient alone, joint meetings with both the patient and caregivers often leads to the best dissemination of information. As the patient’s disease changes, it is beneficial to meet with all involved parties and provide updates.
Most informal caregivers have no formal medical or nursing training yet perform simple nursing procedures on a daily basis. Home caregivers benefit from practical instructions on how to care for the patient — the specifics about medication administration, how to lift them, bathe them, assist them with toileting, etc. These instructions can be provided by home health care nurses or hospice nurses.
The caregivers should also be prepared for the patient’s impending death, if it is to occur at home. They should be told the physical signs and symptoms of the dying process, comfort measures that can be provided, and given emergency contact phone numbers. Finally, the patient and caregivers should be given information about available services (home hospice, home health care, transportation, financial resources, etc) and how to access them.
In addition to information and education, informal caregivers also need support from the health care team. Referrals for individual and family counseling, training family caregivers in problem-solving skills and respite care are just a few of the ways to support these individuals. Simply asking about the impact this is having on them can encourage them to express their concerns and fears. Milder forms of distress often respond well to emotional support from the health care team. More severe distress in informal caregivers may benefit from referral for further assessment and treatment. After the death of the patient, it is important to provide information and resources for bereavement.
Christine Zawistowski, MD, is a Pediatric Palliative Care and Intensive Care Doctor at the Cancer Institute of New Jersey and Bristol-Myers Squibb Children’s Hospital at Robert Wood Johnson University Hospital, New Brunswick, N.J.