Family and caregiver care
End-of-life care is a process that involves not only the patient, but also the family and significant others. Commonly, the patient’s loved ones provide most of the patient’s care, an endeavor that can be emotionally and physically exhausting.
One of the most difficult moments in end-of-life care arrives when the prognosis and the finality of impending death must be disclosed to the patient and any family members whom he chooses to tell.
Before starting this discussion, carefully consider the role and requirements of confidentiality. In addition to causing emotional difficulties, discussion of the patient’s diagnosis, prognosis, and care choices may pose multiple challenges to maintaining confidentiality. The obligation of confidentiality both prohibits health care team members from disclosing information about the patient’s care and encourages them to make sure that only authorized persons have access to the patient’s information.
Although occasionally a physician may feel a need to share information about a patient with an inquiring spouse when the patient can’t give his consent, doing so usually is unwise. Unless the spouse is at risk of harm directly related to the diagnosis, it’s the patient’s obligation to inform his spouse rather than that of the physician or another member of the health care team.
Once the ethical and legal ramifications of discussing the patient’s mortality are considered, the moment for disclosing the information must occur. (See Starting the end-of-life conversation.) Many patients don’t remember the details of their diagnosis and prognosis but recall every moment of the conversation in which the disclosure occurred. The health care team’s competence during this time is crucial to the patient’s ability to maintain trust in the patient–caregiver relationship.
Starting the end-of-life conversation
When it’s time to talk with a patient and his family about starting end-of-life care, find a private space in which everyone can sit comfortably. Make sure the participants have been selected by the patient. Also make sure you have all relevant information at hand. You may want to focus only on the diagnosis and treatment in one session, and reserve discussion of the prognosis and coping for a second follow-up session.
Find out how much the patient knows.
Determine how much the patient understands and how he feels about about his illness. Then tailor your presentation accordingly.
Find out how much the patient wants to know.
Some patients want to know every detail. Others, especially those who are stunned by a prognosis they weren’t expecting, may be able to handle little more than the main concepts. You may find that you need to repeat information several times and to break information into smaller chunks than originally intended.
Share the information.
Stop after providing each chunk of information to assess the patient’s and family’s level of understanding. Encourage the patient and family to explain their understanding of the material back to you. Remember to translate medical terms into basic English; avoid falling into lecture mode.
Respond to the patient’s feelings.
Particularly if the patient seems to be stunned or overwhelmed, ask how he’s feeling. It’s important to understand the patient’s feelings so you can respond appropriately as part of the patient’s support system.
Plan and follow through.
Develop a concrete plan based on the patient’s concerns and medical issues. Discuss it with the patient and family on a step-by-step basis, and contract with the patient to implement the next step. Make sure the patient knows how to reach the appropriate member of the care team if an emergency arises before the next planned contact or clinic visit.
If the patient or family begins to weep during this conversation, stop the session and take a break. Stay with the patient. Make sure you have tissues available. Start the session again when the patient seems ready — even if that means waiting until another day. Be prepared to answer the same questions
several times. The first answer may have been too technical for the patient or family to understand, or they may simply be too emotionally distressed to hear it.
several times. The first answer may have been too technical for the patient or family to understand, or they may simply be too emotionally distressed to hear it.
Caregiver roles
Helping the patient understand palliative care goals, services, and the care plan
Accessing palliative care, such as obtaining pain medication at the patient’s request
Advocating for the patient to receive optimal palliative care
Supporting decisions made by a competent patient
Making decisions for a patient no longer able do so himself in keeping with his previously expressed wishes, either verbally or by advance directive
Helping the patient express his needs to the care team, as needed
Providing food and fluids when the patient needs assistance
Performing personal hygiene tasks for the patient, when needed
Maintaining a comfortable environment for the patient
Helping with financial matters, as needed
Arranging for food and supplies to be provided
Managing social visits for a patient who is fatigued
Giving medications as instructed or when needed
Supporting the patient spiritually and emotionally
Participating actively in the bereavement process
Often, the caregivers in end-of-life care are family members. About one-fourth of American families have assumed the care of an older family member or an adult child with disabilities. More than 7 million Americans are caregivers to older adults. More than half of caregivers are women.
The caregiver role is a stressful one, and the person who assumes such a role risks having her own physical, emotional, and spiritual needs go unnoticed as the patient’s illness and impending death take center stage. The closer the patient is to the end of life, the more important the caregiver becomes. Caregivers are essential in accomplishing the goals of palliative end-of-life care — the opportunity to verbalize partings, reconciliation, and the provision of support. The informal caregiver who is helping with end-of-life care fulfills several roles. (See Caregiver roles.)
Demands on the caregiver
The demands on informal caregivers have increased in every setting: inpatient hospice centers, long-term care facilities, hospitals, and home settings. Informal caregivers at home, in addition to their daily household tasks, typically assume responsibility for the patient’s medical care. Medical tasks such as giving analgesics and managing symptoms now are delegated to these caregivers. In fact, it may fall to a caregiver to not only give an analgesic but also to make decisions about dosages.
Caregivers may be expected to manage home I.V. therapy, epidural catheters, and patient-controlled analgesia pumps. They may feel fear and guilt that the analgesic could ultimately hasten the patient’s death. As the patient approaches death, caregivers may feel increasing hesitation and anxiety about giving analgesics for fear that a particular dose may cause the patient’s death. This anxiety is increased tenfold if the patient is requesting assistance with suicide.
It can be especially difficult when the caregiver is the patient’s spouse. (See Tips for caregiving spouses, page 200.) Not only is the caregiver losing the loved one’s companionship but also intimacy, familial stability, and possible wage-earning capacity. The caregiver may transition from being “superman” to being invisible to the patient as the patient withdraws mentally and emotionally from the living world.
Caring for a patient with dementia causes a higher level of stress than caring for a patient with functional impairment from a different kind of chronic illness. A patient with Alzheimer’s disease typically needs an average of about 70 hours of care weekly, with 62 of those hours usually provided by the primary caregiver. Keep in mind, however, that the degree of stress and burden perceived by the caregiver isn’t correlated with the amount of time spent providing care. Active coping skills on the caregiver’s part are linked with lower levels of caregiver stress.
Many agencies provide support and information to caregivers. (See Caregiver resources, page 302.) It’s important that caregivers learn to recognize their own needs and develop strategies for meeting them. It may also help the caregiver and hospice team if the caregiver takes time to write down her perceived strengths and weaknesses as a caregiver. This can help the team develop a care plan that assists the caregiver where most needed.
Comfort & CareTips for caregiving spouses
Enlarge the family unit.
The exclusive relationship you’ve had with your spouse or partner may no longer be realistic because of the level of care your loved one now needs. If you try to handle everything yourself, you may be quickly depleted of energy, frustrated, and possibly depressed.
Communicate sensitively with your spouse.
If you try to be too stoic, your ill loved one may interpret you as lacking compassion. However, if you fully air all your feelings, you may disrupt the patient’s equilibrium and allow the illness to control your relationship. Try to seek a workable balance between communicating your feelings and supporting your spouse.
Let yourself experience a full range of emotions.
Caregivers commonly become numbed by the demands of endless tasks and the challenges of strong emotions. Denying fear, guilt, and anger can lead to depression and may prevent you and the patient from feeling joy in your relationship.
Encourage independence.
If your loved one can no longer contribute to the family financially, urge him to stay involved with the financial decision making. The ill person must be allowed to exercise his remaining abilities to keep from being consumed by the sick role — creating an even greater burden for the caregiver.
Express empathy.
Validate the emotions of the ill person so he has permission to share his feelings.
Seek counseling.
Counseling can validate your experience, help you prioritize tasks, clarify when you should seek respite care, and decrease feelings of loneliness.
Depression
Caregiving doesn’t cause depression, and not every caregiver develops depression. But the effort to meet all the patient’s needs can lead a caregiver to sacrifice her own emotional needs to such an extent that even the most capable person would be stressed. The resulting feelings of anger, isolation, exhaustion, and guilt can exact a heavy toll from the caregiver.
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