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Jim Shalom
A semi-retired physician

Main Family Caregivers – Quiet Heroes

“A commitment to lightening the burden of others is a hallowed conviction.”
Charles Dickens

Case Presentation (1) Miriam:
Miriam is a 96-year-old woman who lives alone. She can move around safely with a walker, her mental faculties are intact, and her hearing is adequate. She takes a few medications including for mild diabetes. She sees her family doctor regularly for routine check-ups and diabetes monitoring.

Case Presentation (2) Ruth:
Ruth is a frail 85-year-old wheelchair-bound nursing-home resident who suffers from mild dementia. She recognizes her family, and her children visit frequently. Her worsening vision has deteriorated to the point where it disconnects her from her immediate surroundings and aggravates her confusion. Eye specialists believe an operation could slightly improve her vision. However, given her dementia which interferes with how she interprets what she sees, the question arises whether a possible vision improvement will improve her orientation and justify the stress, disruption of her routine and risk of an operation.

The above standard rendered case scenarios are typical physician case presentations. However, as presented, they overlook an important point – that neither patient manages independently. There is at least one supporting caretaker involved, generally a family member who, while unmentioned, is instrumental to their care.

Although Miriam (case 1) is, for the most part healthy and spry for a 96-year-old, it is her daughter who deals with home maintenance, medications, and the increasing need for supervision. In addition, her daughter accompanies Miriam to the physician’s office and is actively involved in discussing her care with the physician.

The second case, that of Ruth, exemplifies how, even when daily needs are met by the nursing home team, a family member is usually involved in crucial decision-making – in this case, assessment of the merits and risks of an eye operation.

I term these supportive people the main family caregiver, or MFC. Often there is just one family member – a spouse, son, daughter, or parent – who assumes the main responsibility for the care of a dependent relative.

An MFC is typically responsible for the personal care, nursing, and medical needs of a person, usually a relative, who cannot function independently. This role garners increasing importance the greater the cognitive status of the patient is limited. The term does not necessarily describe a single caregiver, as tasks may be split among family members, with one, for example, following day-to-day care, while another member may deal with financial issues.

The scope of MFC involvement: A major study has shown that about one quarter of adults are caregivers, illustrating that the need for family-member caretaking is ubiquitous. Nonetheless, despite its vital importance, physicians generally do not adequately address MFC participation, even when it is critical and decisive. They, and other medical team members, too, may lack the skills, time or inclination to talk to relatives in any detail. Concerns about confidentiality, sometimes exaggerated, can likewise exclude the MFC from access to vital information.

The roles of the MFC: One role is to be the patient’s advocate standing up for his / her rights. A physician may forget to write a prescription or order a test. People working within the medical system can sometimes be harsh and insensitive. The medical system itself can present problems, too, for example in accessing special authorization for a medication or test. In such instances, the MFC can play an interventionist and assertive role in helping maintain appropriate quality of care. A second role is as a liaison between the “system” and the patient. Some patients, especially the very ill, tend to be preoccupied exclusively with their own circumstances and may consequently have a distorted impression of what can and cannot be done for them. Because of this, or perhaps personality quirks, they may be uncooperative, make unrealistic demands of the caretaker team and thereby risk alienating those who are trying to help them. In such situations the MFC intervention may facilitate patient cooperation.

Reasons for assuming the role of MFC: A common motivating factor is the stark realization that there is no one else to fill the vacuum. Acting out of a sense of family obligation, however admirable, can render this demanding task even more challenging, especially if the relationship between patient and MFC has been problematic in the past.

Ongoing demands on the MFC: The task is often emotionally and physically demanding, and it can be disruptively time consuming. Analogous to taking care of a child, it requires an adjustment in personal priorities.

There is no official manual on how to be an effective MFC, and those who assume the role may well find some of its tasks and responsibilities awkward and unfamiliar.

The role of the MFC for an institutionalized patient: In an institution such as a nursing home, though the care is provided by a professional team, the MFC still retains several basic relevant roles including non-abandonment, advocacy on the patient’s behalf and involvement in critical care and value-based decisions.

The role of the MFC in the home setting: Tasks requiring MFC involvement can include non-medical activities such as attending to personal needs (dressing, showering, etc.) and instrumental needs (banking, driving the person to appointments etc.). Medical and nursing tasks may include measuring blood pressure or blood sugar levels. Even when a professional home caregiver is involved, the MFC will typically supervise them, and, at times, stand in for them.

Filling prescriptions and ensuring that medications are taken as prescribed are vital medical tasks, as incorrect use of medicines can cause complications including unnecessary hospitalization. Medications have confusing names, and many patients today are on complex regimens. Furthermore, there is often a troublesome disparity between what the family physician prescribes, what appeared on the last hospitalization discharge summary, what the pharmacy dispenses, and ultimately what the patient actually takes.

Handling new onset (acute) complaints or a deterioration in the patient’s medical condition can be daunting for the MFC, who may lack the basic knowledge necessary to assess the severity of the symptoms such as shortness of breath or new-onset or worsening pain or assess and/or treat acute findings such as fever or abnormal sugar levels. It is hard for anyone, and doubly hard for a nonprofessional, to ascertain how abnormal a medical problem must be to justify non routine action, such as contacting the physician or heading to the ER.

Dilemmas are similarly hard to deal with, especially at decision junctures where there is neither a clear-cut medical protocol nor an obvious good solution. A common such occurrence is a deteriorating home medical situation when previous hospital experiences have proved disappointing.

When a strategic decision is required and the patient is not able to make a decision, what rationale should guide the MFC’s position? I believe that there are four “voices” that should be heard:

1.The patient’s known view: Patients frequently have preferences which they may have expressed and written down in some sort of advanced directive.
2. The patient’s implied view: When no advanced directives are in place, but the patient’s views are known, preferences can be considered and brought into the discussion, as in “Mother always insisted that she did not want to be connected to life-extending machines.”
3. The MFC’s view: MFCs may have their own views, which can differ from those of the patient.
4.Other family members’ views: In some situations, the various family members involved may have differing views.

It is the physician’s role to sort out these opinions and, after taking the medical exigencies into account and the physician’s own view, decide what to do.

How to play a more effective role as an MFC: It is important that the MFC understand both the patient’s current medical condition and what probably lies ahead (i.e., the prognosis).

Some difficulties involved in being an effective MFC: These include not adequately understanding the patient’s illness or appreciating its severity, along with unrealistic expectations of the treatment provided. They may lack technical competence in tasks such as changing a bandage or calibrating an insulin pen. MFCs may well have their own health problems or other issues that require attention and conflict with provision of support. The emotional stress and time-consuming demands of caring for a loved one may be overwhelming to the point of both harming the MFC’s day-to-day functioning and emotional equanimity and the patient’s welfare.

Transitioning from a voluntary interactive relationship to one in which the MFC becomes primarily a caregiver: As patients’ conditions deteriorate, they become progressively more dependent on outside support and cooperation to manage their lives and illnesses requiring increasing MFC involvement. What often began as a mutually acceptable and interdependent relationship will then evolve into one of increasing MFC dependence. Understanding this transition process can help the MFC accept that the reciprocity that once existed is receding.

Some issues with the patient – the MFC and family relationships: Some MFCs are better able than others to empathize and view the situation from the patient’s perspective. The patient may not necessarily cooperate with the MFC or be appreciative of what is done for them. If the pre-illness relationship has been problematic, past grievances may now interfere with current interactions. Occasionally, for financial or other reasons, there may be a lack of commitment to the primary well-being of the patient, but in my experience, this is rare. Other family members may also be critical of the MFC, while unwilling themselves to play a more active role.

The main family caregiver requires support and empowerment from the physician and caretaker team: If they are to play a role in overseeing treatment and assist in decision-making, MFCs should receive ongoing pertinent information from the patient’s physician. Secondly, the physician should strive to coordinate realistic expectations with the MFC and, presumably, the remaining family members, too. Thirdly, ground rules need to be clarified. To what extent can the MFC actively participate in the physician-patient encounter and under what conditions – if any – can he / she initiate physician contact? Fourthly, MFCs may have their own preferences as to how involved they wish to be in receiving information and participating in the decision-making process. It makes it easier for the MFC when the physician’s approach is accommodating whenever possible. Fifthly, as medical systems typically do not have a place for MFC involvement, it helps for the physician to periodically verbally acknowledge its important role and provide positive feedback, especially if, for example, the MFC has made a special effort to obtain a physician-recommended medication that requires special authorization.

Growth potential: While dealing with disease progression can seem like an endless nightmare for both the patient and the MFC, there are potential areas of light, one of which is the prospect of growth in the relationship between them. Because of their shared role in promoting patient welfare, even as the medical situation deteriorates, satisfaction can paradoxically be derived from a deepening relationship between a patient and those providing support. This can provide the patient with succor and strength and the MFC with a sense of personal satisfaction and pride.

Summary: A high-functioning MFC has an important role to play in facilitating quality ongoing patient care and often also ease the tasks of the caretaker team. This blog merely touches the surface of a complex issue of which each sub-theme deserves its own essay. My purpose is to present an overview of this unduly neglected subject.

From my perspective as a physician, I have found that my involvement with main family caregivers, although time-consuming, has both deepened my understanding of the patients I have treated and been a particular source of satisfaction encountering people trying to do the best for their loved one.

About the Author
Jim Shalom is a specialist in family medicine, with interests in end-of-life care and the Israeli political scene. He resides in Galilee. He has spent most of his adult life living and working in Israel.
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