Jim Shalom
Jim Shalom
A semi-retired physician

The Main Family Caregiver – The Unsung Hero

Non nobis solum nati sumus (“Not for ourselves alone are we born”) – Cicero

Case presentations

  1. is a 96-year-old woman who lives alone. She can walk safely with a walker, her mental faculties are intact, and her hearing is adequate to maintain a conversation. She takes only a few medications. She suffers from mild diabetes and sees her family doctor regularly. He checks to see how she is doing in general and, specifically, monitors her diabetes.
  2. is a 74-year-old woman diagnosed with and aggressively treated for leukaemia. She is medically stable and lives at home with her husband. Her cognitive status is intact, and, while in principle she is independent, in reality she tires easily, and is not stable enough physically to be left alone for more than a few hours at a time. She has to cope with both the consequences of the disease itself and the side effects of treatment. With little understanding of medical processes, she is overwhelmed emotionally by her present condition. The tertiary hospital treating her is an hour and a half’s drive away.
  3. is 85 and lives in a nursing home. He has a plethora of problems, the active ones being dementia and a previous stroke. In terms of dementia, he does recognize his family, but not much more. The stroke has paralyzed him on one side and left him wheelchair-bound. He requires help in all activities of daily living, including feeding and dressing. He is doing poorly and has recently lost some weight. One day he develops a high fever that does not respond to medication or antibiotics, and the question of referral to hospital arises.

Above are three case scenarios commonly encountered by physicians. The standard routine is for the physician to diagnose, treat and document.

However, these depictions all leave out one important point: in none of the cases does the patient manage independently. In each, there is at least one supporting caregiver involved, usually a family member. However, although instrumental to their care, the caregivers’ essential involvement is not mentioned.

In the first case, despite M’s independence, it is her daughter who shops, cleans, takes her to the physician, picks up her medications from the pharmacy and generally watches over her. The dialogue of care at the physician’s office involves the daughter as well as the mother.

In the second case, it is the husband who drives his wife to her medical appointments, and he is better able than her to follow the physician’s explanations. He obtains the necessary authorization for her special medication and deals with the medical bureaucracy in general. He also makes himself available to help her out at home when she cannot manage alone. He is present when she visits the specialist, and is often the one who asks the questions.

In the final case of S., though his daily needs are met by the nursing home team, he lacks the understanding to oversee his care or make decisions regarding the follow-up of medical problems outside the nursing home. His son provides him with these services and takes part in all the important discussions about S.’s care.

I refer to these people as the main family caregiver (MFC). Often there is one family member – a spouse, son/daughter or parent – who predominantly assumes responsibility for the care of a relative who cannot cope independently. However, the term is conceptual, as one or more family members, or even friends, may assume and share the caregiving tasks. In summary, the main family caregiver (MFC) is the individual(s), usually a relative, most involved in the care of a person who cannot function independently because of personal, nursing and/or medical needs.

One study has shown that about a quarter of American adults are caregivers. Thus, we can see that, in this day and age, the necessity for family-member caretaking is ubiquitous. The medical system, however, with its patient’s-chart-based approach, often fails to address MFC involvement, even when it is critical and decisive. Concerns – and sometimes over-concerns – with confidentiality can prevent MFC access to the information they require for an adequate understanding of what is going on. By and large, physicians do not receive training in integrating MFC involvement into the care of their patients, and may be unwilling to spend extra time discussing matters with family members in any detail. Nor is there any official manual that explains how to be an effective MFC or how to deal with the personalities involved and the tasks at hand, some of which may be unfamiliar or awkward.

Patient needs addressed by the MFC

Basic issues: In a home setup, both personal care (i.e., ADL= activities of daily living), such as help with showering and walking, and more general care (IADL= instrumental activities of daily living), such as shopping, making phone calls, cleaning and attending to financial matters, are usually necessary. Nursing care includes traditional tasks such as monitoring blood pressure or sugar levels. Even where there is professional home-care support, it is typically the MFC who will oversee their work and fill in when the caretaker is on vacation or otherwise unavailable.

Medical needs, including assessment of when medical advice is required: Medical needs include dealing with doctors’ appointments, providing transportation to them and addressing active medical issues. Medical issues may be acute: a fever, complaints of feeling unwell, and sugar or blood pressure levels that are too high or too low may need to be assessed and dealt with.

It is often the MFC who deals with medications and attends to special authorizations and pharmacy issues, clarifies what medications the patient takes (and for what), and tries to ensure patient compliance.

Understanding the patient’s medical and nursing situation: Sometimes patients who are very ill are incapable of understanding or appreciating what is best for them. It is, therefore, vital that the MFC understand their current medical situation and what probably lies ahead. A knowledgeable and caring MFC who can appreciate the complexities of care can help the patient synchronize better with the caretaking staff and thus improve patient compliance with the recommendations of the physician and medical team.

These tasks can be challenging for the MFC, who may lack the basic knowledge necessary to assess the severity of an acute problem. Ascertaining how abnormal a problem must be in order to justify a visit to the ER is not always straightforward for anyone, let alone a nonprofessional. Strategic medical concerns, such as deciding on complex testing when justification is suggested but not obvious, can be equally challenging.

Two important complementary roles for the MFC:

Acting as the patient’s advocate: The MFC can stand up for the patient’s rights. A physician may forget to write a prescription or order a test, and medical system staff may sometimes be harsh or insensitive towards a docile or confused patient, resulting in suboptimal care. The medical system itself can present as a sort of obstacle course when special authorization, perhaps for a particular medication, has to be applied for. In such instances the MFC can play an interventionist and assertive role in helping to obtain appropriate care.

Acting as liaison between the “system” and the patient, and eliciting patient compliance:  Patients, especially those who are very ill, have a tendency to be preoccupied with their own personal situation. They may be uncooperative, make unrealistic demands of the system and thereby risk alienating those very caregivers who want to help. When a patient is uncooperative, the MFC may be more successful than the professional team at eliciting compliance.

For the institutionalized, even when everyday tasks are handled by the nursing home team, an involved family member is still necessary, especially when dealing with a resident whose cognitive status is compromised. The MFC’s vital role in patient advocacy became conspicuous by its absence in many nursing homes at the start of the COVID pandemic. It became apparent that patient care had been frequently mismanaged both before and during the pandemic, with lives unnecessarily lost. Had MFC involvement been permitted, perhaps some of those deaths may have been prevented.

The MFC’s involvement in the decision-making process can be crucial, for example, when dealing with the pros and cons of hospital referral in an ambiguous situation. When the advantages of hospital referral are possible, though but not necessarily probable, and a previous hospitalization experience may have been traumatic, input from the patient and family including their preferences, should be obtained before reaching a final decision. Moreover, if a nursing home resident is sent to hospital, it will usually be the family who stays with them in the ER and visits them later in hospital. Finally, in those situations when death is imminent, and decisions need to me made as to how to deal with the situation, if the patient cannot speak for him/herself and advanced directives are not in place or not relevant, the role of the MFC becomes paramount.

Complexity of some decision-making: Some problems, such as which antibiotic would best treat a particular infection, fall into the exclusive medical domain of the physician. Others, such as whether or not to embark upon invasive procedures which may improve longevity but for which the likelihood of long-term benefit is unclear, can be highly ambiguous. Dilemmas of this kind are value-based, and pit the chance of improved longevity in the long run (with, perhaps, compromised quality of life) against comfort provision in the here and now at the cost of rejecting a possibly life-extending intervention. The patient’s and family’s preference should be solicited before the physician makes a final decision. When the patient is unable to participate, the MFC can act as proxy by proposing what they think the patient would want.

The transition from an independent interactive relationship to one in which the MFC becomes primarily a care giver:

While there is great variation, we may presume that healthy adults, even if they receive help here and there, usually run their own lives, particularly where personal and intimate issues are concerned. However, as their overall condition deteriorates, they often become progressively more dependent on outside support to handle their lives and illness, and increasingly reliant on the goodwill and cooperation of others. At this point, the need for MFC involvement becomes greater, and a mutually interdependent relationship is transformed into one in which one party is increasingly dependent on the other. Analogous to the transitions seen in an Escher print, the role of the MFC is transformed from one of reciprocity to one in which interaction is characterized primarily by caretaker involvement. Some remaining reciprocity between the patient and the MFC is nonetheless essential if the relationship is to evolve positively as the transition works best when both parties concerned adjust well both to the changes in the patient and to the altered dynamics between patient and MFC.

If the MFC can understand and accept the transition to the role as a caregiver, he or she can more easily become reconciled to the fact that the freeflowing mutuality that existed when the patient was healthy and independent is no longer the dominant mode of the relationship.

Family member coordination: While ideally all significant family members would be kept updated on the progression of the patient’s disease, this can be cumbersome, and, in practice, it is rare. The MFC, however, can play a contributory role here both by updating the other family members and by representing their views to the physician. In such a case, it is important that the MFC acknowledge and quote family members whose views are different from their own. Notwithstanding, when the situation is appropriate, often during a pivotal period, or just before, it may be advantageous for the physician to be in active contact with more than one family member, or even initiate a family conference.

Issues with the MFC: Some people who assume this role are better equipped than others with the necessary skill set. Some are better able to empathize and see the situation from the patient’s perspective. Some are more able than others to set past grievances and resentments aside. The patients themselves are not always appreciative of what is done for them. Other family members may be prone to criticize the MFC and offer unsolicited advice, despite being unwilling to play a more active role themselves. Given this potential background, it should not come as a surprise that there are times when the MFC may feel lonely and unappreciated. Consequently, sometimes the role of MFC is so demanding that it cannot be performed properly and / or interferes with the functioning and emotional equanimity of those who assume it. Nonetheless, however they are perceived, and however little their efforts are appreciated, there is no doubt in my mind that regular MFC involvement greatly improves a patient’s quality of life. However, when MFCs find themselves overwhelmed by the task or ineffective in its accomplishment, it is to be hoped that they will have the insight to recognize that they are not coping effectively and the humility and initiative to seek help.

Growth potential:  While a progressive illness can seem at times like an endless series of nightmares, there are potential areas of light, one of which may be growth in the relationship between MFC and patient. A commonly encountered positive paradox is that, as the patient’s condition worsens, satisfaction can nonetheless be derived from the deepening of the relationship as patient and caregiver together go through this chapter of the patient’s life. The emotional strengthening of the relationship between patients and those supporting them can provide the patient with succour and strength in coping with the negative effects and burden of progressive illness and can be a source of satisfaction and fulfilment for the MFC. In my nursing home work, I have frequently witnessed and been inspired to observe a new closeness between parent and offspring, even where no such warmth had previously existed. Not infrequently, there is also a deepening of the relationship between the MFC and the physician / treatment team as together they accompany the patient’s odyssey.

Adjusting and fine tuning the degree of involvement in the decision-making process: The degree to which the MFC is comfortable being involved in the decision-making process may vary. At one extreme, some caregivers prefer the physician to be entirely responsible for making the tough decisions and just informing the MFC of what has been decided. Others, who believe they know better than the physician what is best for the patient, prefer to be the decision-makers. Most position themselves in the middle: they want their views heard but expect the physician to be the decision maker taking responsibility for the consequences of the decision. I try to steer the degree of family involvement to suit patient and family member preferences, in the hope that particularly after the fact, they will be satisfied with their degree of participation.

Personal note: From my perspective as a physician, I have found that my involvement with the main family caregiver, while time consuming, has both deepened my understanding of the patients I care for and afforded me an opportunity to accompany the MFCs on their journey of support.

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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