The rights of family caregivers

HJN February 2022
Samantha Winemaker

Some people diagnosed with a serious illness hope they will be able to shield their family from their experience. Most go through their journey trying to make the smallest ripple in the water. They assume if they attend appointments alone, try to remain as independent as possible, shoulder all of the big decisions, and stay quiet about their feelings and fears that they will protect their family from the ‘burden’ of their illness.

They want their independence to shelter and allow others around them to continue with their own lives, status quo, as if the illness is just a minor inconvenience. 

Despite a person’s best intentions, the family will begin to naturally form an “informal team” around them. The informal team begins to take shape with different people taking on different roles that change over time. Intuitively, informal team members seek to understand what is happening, how to plan and prepare, and how to get ready for the challenges that lie ahead.

If they are intentionally or unintentionally shielded from being involved, they begin to feel helpless. Consequently, they withdraw from an active role and begin to stay quiet because they haven’t been invited into the fold by the patient. The atmosphere becomes polite, superficial and “safe” from any real conversation about the illness experience. A charade is in play. The patient and his/her informal team are negotiating an awkward dance around open, honest communication with each other. Families often adopt a cheerleader role, because they have no permission to be real. But they want to be real.

The family team can also find itself isolated from the interactions with the healthcare providers. They report feeling ignored at appointments while the patient takes the spotlight. Sometimes, their observations about the patient aren’t invited by the clinicians, yet they have amazing insight into the patients’ day to day journey. 

Furthermore, they might feel conflicted about voicing their concerns because they don’t want to discard their “positive vibe,” or be seen to be divulging information given in confidence by the patient. They sit in the room beside their loved one, and assume the false appearance of having a passive role.

Many family members resent that they were never given the chance to meet with the healthcare clinicians alone. So, they just go with the flow and keep their insights and worries to themselves, bottled up. 
As the illness changes, the family team becomes more involved instrumentally. They drive, do groceries, banking, cleaning, and errands. Eventually, they are needed more and more, shifting from errands to providing more personal care and a physical presence.

This has a huge impact on the usual rhythm of caregivers’ lives. They start to scramble to balance the needs of the patient and their own family/personal needs. Because there was no open negotiation about the caregiver role from the get go, they find themselves far into the journey without a proper plan. The “code of silence” around the realities of the illness, including what to expect, forces the family team to operate on instincts instead of a well laid out plan to help them understand how their own lives will change. 

A reactive, crisis driven, pattern ensues because everyone is always caught off guard. Lack of explicit communication between the patient and their family, the health care team and the family, put all players at a disadvantage. In an effort to focus on the person with the illness, the families often feel lost. 

Yet they too feel the effects of the illness. Unfortunately, they aren’t treated as a vital part of the wider care team who need information, inclusion, and care themselves. Their insights, perspectives and knowledge of the person with the illness go unexploited. 

This is an avoidable and missed opportunity to broaden the supports around the patient, to create a liaison between home and healthcare to ensure that the survivors, after death of a loved one, live on as healthily as possible as they attempt to integrate back into their own lives. 

It is a sad misconception to think that a family can, and should, be protected from the truths of the illness. They are brought into the situation because of circumstances beyond their control, and they require and deserve as much attention as the person with the illness. It is their right to know how their lives will be affected so they can best prepare for the journey at hand. The isolated family will struggle and this will amplify everyone’s suffering. Families need to assert themselves into the healthcare team. After all, they’re a critical addition to the patients’ journey. 

Dr. Samantha Winemaker is a palliative care physician based in Hamilton. Twitter @SammywinemakerInstagram Sammy.winemaker.