Future Care Planning: Concerns of Elderly Parents Caring for a Person With Serious Mental Illness

Alicia Nash, the wife of the Nobel laureate John Nash (who had schizophrenia and was the subject of the movie A Beautiful Mind), is known to have expressed concerns regarding care for their son (who also has schizophrenia) after their demise. She had asked, “When I am gone, will Johnny be on the streets?” (1). Many parents who have children with serious mental illness share similar concerns. Although there is optimism that specialized first-episode and clinical high-risk programs will change the long-term trajectory of those living with a serious mental illness, many individuals still depend on their families for both subjective and tangible support well into adulthood.

The Question of Future Care

When an adult with serious mental illness cannot live independently because of illness-related disability, parents often assume a caregiving role. Parents’ and other relatives’ roles can be critical, even if service users have access to advanced mental health services. Family members often provide to meet some or all of the service user’s tangible and emotional needs. Although caregiving can be gratifying, long-term caregiving can be stressful and may adversely affect the caregiver physically, emotionally, socially, and financially (2). Furthermore, as parents age, the kinds of support they can provide become more limited.

Most parents recognize that their demise may adversely affect their children with serious mental illness and lead to the service user’s increased stress, symptom exacerbation, and possible hospitalization. Without relatives monitoring and prompting them, service users may find that health care delivery systems alone may not be able to meet their needs. Understandably then, elderly parents are often concerned about the care of their children with serious mental illness after their death and wish to develop a future care plan before their passing (3).

Despite awareness about the need to transition and transfer caregiver responsibility, many parents may be uncomfortable broaching conversations about their deaths with their children, especially if their child has a serious mental illness. Parents may worry that a discussion about their passing might precipitate a deterioration in their child’s clinical condition or be too emotional for both parties. Additionally, people with serious mental illness may find it difficult to imagine a future without their parents and hesitate to talk about it. Conversations, decisions, and planning may stall. Grounded in our experience working in tertiary care psychiatric rehabilitation settings, we focus on making future care planning easier for elderly parents with children living with a serious mental illness. Here, we present guidance and recommendations based on this experience.

Challenges in Creating a Good Enough FUTURE Care Plan

In many countries, a lack of adequate community resources means that the family shoulders the primary caregiving responsibility for a person with a serious mental illness (4, 5). When possible, parents may seek a supportive sibling to be a prospective caregiver for the person with serious mental illness. However, even in low- and middle-income countries, the traditional family support system has been collapsing over the past two decades (6). Parents are understandably concerned about continuity of care for their children with serious mental illness. Furthermore, robust literature reflects the burdens of being a sibling of a person with serious mental illness (7–9). Siblings may be wary of becoming a primary caretaker if the person with serious mental illness does not have a daily routine or structure, uses substances, or has unpredictable behaviors (10).

Some parents may approach another family member to take up caregiving responsibilities (11) if the siblings do not assist. Unfortunately, parents may find that their options for recruiting another caregiver are limited. Relatives, especially those who are not the parents, sometimes distance themselves from the person with serious mental illness. Parents may be reluctant to seek assistance from family members who perceive the person with serious mental illness as an emotional and financial burden and may turn to trustworthy friends, neighbors, or paid caregivers. If kin are not available, the future care plan might include supported accommodation or supervised residential care. However, these options may not be universally available, and their quality may depend on available finances and may vary widely (11). The above factors often leave many parents uncertain about the future welfare of their child with serious mental illness. These concerns are occasionally addressed by mental health agencies (12) but are seldom covered in psychiatric training (4, 13). As a result, parents have often reported this challenge as an unmet need from psychiatric services (11, 14).

Developing a Strong Future Care Plan

Recommendations for Clinical Practice

A successful future care plan for a loved one with serious mental illness must address the following questions: When should the plan be done? Which mental health professionals should guide the development of the plan? Who should participate in the planning? What are the elements of a good plan?

When to Plan for Future Care

Just as mental health professionals guide parent caregivers to facilitate medication adherence and prevent relapses for a child with serious mental illness, they should also routinely take the lead in discussing and cocreating a future care plan. Elderly parents accompanying a service user for treatment should serve as a cue for mental health professionals to explore concerns about future care; an agency might find it useful to routinely raise the issue of future care planning with all service users as they reach their 40th birthday, for example. Advance care planning (15), traditionally used for people with progressive deteriorating and terminal illness, is relevant in this context.

Ideally, the family should make a future care plan when parents are in good health. The starting point is to understand service users’ preferences and adopt a problem-solving approach to optimally use available resources (13). Parents may also benefit from print and online resources created to help families of persons with mental illness (4, 13, 16). Creating a future care plan will likely require multiple meetings with the mental health professional and family members (13), and needs may change over time.

Mental Health Professionals and Development of the Future Care Plan

Jones and colleagues (17) noted the importance of mental health professionals meeting the needs of individuals with schizophrenia related to parent death. Because mental health systems differ around the world, no universal recommendation can be given about which professionals should assume responsibility for initiating a discussion about future care planning if a family does not do so. Any professional leading such a discussion should be knowledgeable about serious mental illness, be comfortable working with family members, tolerate a range of participant affects, and be enthusiastic about helping family members deal with practical issues. In larger mental health systems, this professional might be a case manager or social worker; in a private practice or a setting with limited mental health resources, it might be a prescriber. The professional guiding the discussion must listen to complex issues and be knowledgeable about relevant local resources to promote successful future planning. Mental health professionals of any discipline who are adept at social skills training might be particularly apt for guiding emotional conversations about these transitions and ensuring participants can listen to each other and articulate their needs. In addition to facilitating discussions on future planning, the mental health professional can play a vital role in identifying life skills service users might benefit from developing and in triaging them to the services while the plan is being developed. Being proactive in this regard is essential.

Participants in Future Care Planning

The person with serious mental illness should, of course, be a core participant. Some parents may have many suggestions for future caregivers and may have already asked these individuals to become part of the planning team. Other parents may be reluctant to identify possible prospective caregivers and have discussions with them. With the consent of the service user, the mental health professional working on the plan needs to be proactive in initiating discussions with other family members identified as possible supporters. Candidates might include siblings and other relatives or friends who may already be involved in coordinating some care for the person with serious mental illness. This conversation can begin on the phone and then move to meetings in the office as the team members become apparent. Because prospective caregivers may have already considered care planning, an open discussion with collaborative decision making can help develop a better plan (18, 19).

Elements of a Good Future Care Plan

The future care plan needs to meet the instrumental and affiliative needs of the service user. The type and extent of support required by service users may differ across life areas (e.g., food, shelter, clothing, money management, illness management, overall health, insurance, and transportation), and the support system should be individualized (13). Some service users may be independent and require little assistance, whereas others may need support in multiple areas. Therefore, prospective caregivers could consider sharing the responsibilities of caregiving; a team concept can be beneficial. For example, a paid caretaker might perform daily chores, a friend might offer help with accessing medical consultations, and a family member might help manage finances. Legal aid may be needed to navigate guardianship issues, advance directives, will, trust, taxation, and benefits (20). A certified financial planner’s advice may also help guide the family in protecting resources for the service user’s long-term access, especially if the service user is receiving government disability payments. Parents may benefit from interactions with other parents or families and from linking up with family support groups like the Planned Lifetime Assistance Network (www.nationalplanalliance.org).

Planning for social support and comradery is also critical. While many service users have a circle of friends, others are isolated and depend on kin for social contact and nurturance. An open discussion is needed of how social contact, holidays, and outings will be handled once parents cannot meet this responsibility. The overall level of contact desired by the service user, and from whom, are essential parts of any future care plan development. Several members of the family or team can share this responsibility.

In gauging instrumental and affiliative needs, considering the support required by the person with serious mental illness in the past (accounting for periods of high and low functioning) could help anticipate supports likely to be required in the future. Parents often underestimate their child’s ability to learn new skills (13). Supportive environments can guide service users to work on personally relevant life domains, which will likely motivate them to learn relevant life skills. Life skills can be learned in a variety of settings. Parents can often help establish modest and attainable steps toward learning the required skills, such as doing laundry or light cooking. Many mental health agencies have an assertive case management team or programs to teach life skills through activities at the clinic or as part of a clubhouse. Parents and mental health professionals should encourage and appreciate every preparatory effort, however small, by the service user to learn necessary skills.

A critical task, future care planning helps service users anticipate and prepare for significant life transitions. If the service user and parents live together, a vital part of the plan addresses the service user’s future residential needs. This issue is particularly complicated and can take time and thought to resolve. Some families plan for their loved ones to stay in their current home, but this arrangement requires that the service user manage the household. Other families may plan on the service user moving into a supervised setting. Here, the issue is often one of timing: should the move be done while the parent is still able to help support the service user in adjusting to the new circumstance, or should it be delayed, particularly if the service user provides some support and assistance to the parents (21)? Making and implementing such an important decision can take time.

Conclusions

The question of future care can be distressing for parents who have children with serious mental illness. However, it signals the need for care planning and requires urgent and strong advocacy led by mental health professionals. Such discussions should become an integral, routine part of treatment planning (22). Mental health professionals should take the lead in collaborating with parents, service users, and other stakeholders to facilitate future care planning. This initiative will provide a sense of relief to parents that their son or daughter will be cared for after their lifetime while ensuring that the service user has the best chance to manage the transition successfully.