THE CURRENT DIRECTION of healthcare emphasizes patient-centered care that is efficient and cost-effective. Although technology has been responsible for improving patient outcomes, families are often thrown into the unfamiliar role of providing end-of-life care for their loved ones. In many ways, this fits the ideal model for timely, effective, equitable, and patient-centered healthcare. Having family members act as primary caregivers also creates risks, however, and a lack of knowledge or expertise in fulfilling that role is just part of the problem.
The physical and emotional toll of caring for someone who requires assistance moving, bathing, eating, grooming, and using the restroom increases if he or she is exhibiting signs of confusion or aggression. The literature is abundant with evidence that family caregivers are prone to anxiety and depression related to their duties.1-3 Additionally, burdened caregivers can put their patients at risk, as anxiety and depression can impact judgment.3
Caught in temporary situations that can seem endless, many caregivers experience mental health issues related to social isolation, financial concerns, and physical exhaustion. Using the following composite case study as an example, this article explores the psychological impact of providing end-of-life care for a loved one and offers tools to assess and alleviate caregiver burden.
Nancy is a married, middle-aged teacher with school-aged children. She recently moved her widowed father into her family's home when he was diagnosed with a terminal illness. As his primary caregiver, Nancy takes on various uncomfortable tasks, such as assisting with bathing and toileting. Distracted by other family responsibilities, Nancy accidently administers an incorrect dose of pain medication. She begins to feel that she cannot provide the best care for him.
Nancy would like to discuss shared responsibility with her brother and sister, but she is not getting the cooperation she had hoped for. Now, she is considering nonmedical caregivers to care for her father while she is at work, an expense she had not anticipated. When her father's healthcare provider recommends home hospice care, she decides to explore the benefits of this service.
The hospice model
While hospice and palliative care are each associated with end-of-life care and life-limiting diagnoses, palliative care can be provided in conjunction with curative measures.4 Hospice care applies to terminally ill patients who have stopped seeking treatment in their final months.4 In each situation, the care plan typically meets the aims of the Institute of Medicine's 2001 report, Crossing the Quality Chasm, in which healthcare systems are challenged to improve in six areas:
- patient-centered care
When patients are no longer seeking a cure, family-based home hospice care fits well into these aims. Providing comfort measures at home removes patients from the rigor and noise of acute care settings, making them the focus of care and supporting their end-of-life decisions.5
Hospice care requires two physicians to certify that a patient has less than 6 months to live, assuming the disease takes its usual course and the patient has stopped seeking curative treatment.4 Medicare recognizes that no one can predict the course of a terminal diagnosis to that degree of accuracy, however, and additional benefit periods are available to continue hospice as long as the patient's condition continues to decline. The hospice model is efficient, equitable, and supportive for patients, families, and at-home caregivers. Even with hospice support, however, family caregivers can find caring for a loved one to be a burden that can create safety issues.
Navigating caregiver burden
The physical and emotional impact of taking responsibility for a seriously ill loved one can be considerable. Caregivers are often deprived of their social, fiscal, and physical freedoms, affecting their mental and emotional health.1 Certain variables may lead to perceptions of more or less burden. For example, caring for an older adult may be perceived as a greater burden than caring for a child.1 Factors that may influence this perception with older patients include physically difficult tasks, such as assisting in the restroom, and the presence of dementia.1
A 2014 study of caregivers responsible for patients with advanced cancer diagnoses found high levels of anxiety and stress.2 Caregivers who used respite services to care for their own needs, however, experienced lower stress levels.2 The study also found that caregivers with high anxiety felt less able to provide care, suggesting that an appropriate intervention may be to teach caregivers to address their own needs.2
Another study involving caregivers of patients with cancer found that anxiety and depression in caregivers could affect how they interpreted their loved one's symptoms. For example, caregiver anxiety influenced the perception of anxiety in patients, and caregiver depression correlated with overestimation of symptoms such as dyspnea, nausea, and irritability.3
Caregivers responsible for patients with advanced dementia perceived their burden in proportion to the severity of the patient's symptoms, especially when the patient exhibited signs of aggression or delusion.6 Living with patients with dementia who are receiving care increases the level of caregiver distress.6 These caregivers are at risk for depression and should be screened for treatment.7
As a patient's condition changes, the stressors affecting the caregiver and his or her coping mechanisms also change.7 A 2014 study used the Mini Mental State Examination and the Direct Assessment of Functional Status to determine patients' dementia score, as well as the Caregiver Burden Inventory (CBI) and the Brief Symptom Inventory to assess caregiver distress.7-10 The findings were similar to other studies, with correlations found between lower patient functioning and higher caregiver burden, and a link between patient hostility and caregiver burden.6,7
Like those caring for older adults with dementia, caregivers for patients with Huntington disease also cope with the progressive loss of physical and cognitive functions in their loved ones. One factor that can amplify caregiver burden is the effort to regulate what others know about a situation.11 Families caring for a patient with Huntington disease typically see only minor changes to their daily lives at first and often keep the diagnosis private. As the disease progresses, they become more isolated and less able to cope with the mounting demands of care.11 The healthcare team should support these families in finding the appropriate resources and balance for caregiving and self-care.11
A 2015 study of caregiving needs for patients with amyotrophic lateral sclerosis found that more than 93% of patients needed care, 60% of patient care was delivered by spouses, and more than 93% of caregivers acted without help from other family members.12 Caregivers in these situations reported social, physical, and mental health issues, as well as financial problems and depression.12 When caregivers were taught techniques to make daily living easier for patients, however, the researchers observed that the caregivers' perceived burden was lower.12
A 2004 study described caregiver role strain through the lens of Komarovsky's role strain theory, which hypothesizes that caregiver burden is exacerbated by underappreciation and the perception that the caregiver's usual obligations, such as a job, interfere with his or her obligations to the patient.13,14 For example, role reversal, such as when adult offspring must provide care for their parents, may contribute to caregiver burden.13,14 Lack of knowledge or insufficient balance in the demands of caregiving also add to caregiver burden.13
Caregivers responsible for children, parents, a job, or miscellaneous other tasks experience magnified perceptions of their inability to accomplish all they believe is expected of them.13 As in Nancy's case, women tend to take on the brunt of caregiving responsibilities and tend to suffer more with caregiver strain.13
The issue of ambiguity surfaces in Nancy's case when she finds herself taking care of her father's intimate care needs. Her conflicting roles as wife, mother, and teacher are evident, as is the perception of insufficient energy and knowledge to provide care.
As her father is now in hospice care, the healthcare team can come together to alleviate some of Nancy's caregiver burden. A nurse can assign a hospice aide for daily patient visits to assist her father with personal care, such as bathing, grooming, and changing bed linens. The nursing team can prepare Nancy by teaching her about her father's disease progression and offering techniques to manage his medications. A social worker can help Nancy identify community resources that will reduce her burden, such as affordable meal services for those who qualify. The volunteer coordinator can provide volunteers to spend time sitting and chatting, playing cards, writing letters, or watching TV with her father to keep him company. Hospice can also arrange for a chaplain to visit her father and address any spiritual needs.
The biggest help the hospice team can provide is respite care, which is included in hospice services at no cost to the family. All hospice programs are covered under Medicare and Medicaid benefits, and each must provide respite care under the conditions of participation.15,16 Nancy can arrange a 5-day stay in a Medicare-approved facility in which her father would have around-the-clock care. During that time, she can attend to her family and teaching responsibilities and even leave town without worrying about her father's care. Respite benefits can be used as often as needed to prevent caregiver burnout. The first 5 days are free in these settings, but extra time is typically billed and there are different levels of care.15,16
To individualize a plan of care, the hospice staff may employ an assessment tool to measure caregiver burden. The Zarit Burden Interview and the CBI are easy-to-use, validated clinical instruments for measuring caregiver burden.10,17 With fewer than 25 questions, each measures the physical, emotional, social, and mental burdens of caregiving on a numeric scale.10,18
In Nancy's example, a nurse case manager can use one of the two tools to assess caregiver burden and develop a trusting relationship with her. These scales serve as a basis for an individualized care plan for both Nancy and her father.
When the appropriate interventions have been in place for a few weeks, the case manager should reassess caregiver burden and adjust the care plan as needed.19
Rely on support services
The demands of family caregiving can become overly burdensome and potentially lead to physical and mental health issues, but many resources are available to support family caregivers. Healthcare providers should ensure the best possible outcomes for these families by assessing their needs and providing referrals for support services. With the right support, Nancy and others like her can maintain patient comfort and safety as they navigate their caregiving roles.
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2. Ugalde A, Krishnasamy M, Schofield P. The relationship between self-efficacy and anxiety and general distress in caregivers of people with advanced cancer. J Palliat Med. 2014;17(8):939–941.
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