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The Need for a Community of Understanding and Support

October 31, 2017

 

“Some of the most comforting words in the universe are ‘me too.’ That moment when you find out that your struggle is also someone else’s struggle, that you’re not alone, and that others have been down the same road.”

- Ritu Ghatourey

 

As a Social Worker on the Medical Assistance in Dying (MAID) Team in the hospital setting, it has become apparent to me through my participation in the MAID journey with patients and their loved ones that the lack of community support for these individuals is an area that needs greater focus and attention.

 

I have found that family members and caregivers tend to struggle more than the individual receiving MAID as they have so very few supports that can truly understand and appreciate what the experience is like for them. Even in situations where a patient’s supports are involved and accepting of the individual’s decision to proceed with MAID, these family members and caregivers may feel less prepared than the patient and struggle to accept the reality of the situation. Moreover, they may have difficulty managing this distress while still trying to remain as involved as possible in providing support/assistance to the patient at end of life which can be a challenge in itself.

 

While these individuals have reported that they appreciate the suffering of the patient and express a sense of relief after the MAID procedure, they often are unable to communicate their feelings to others, particularly with those who may not be as understanding or who lack an appreciation for MAID in general, which can cause feelings of isolation and frustration. Families are often placed in a position where they are left teaching others about MAID as a means of eliciting a better understanding of where they are coming from rather than receiving the immediate support that they had been looking for to address their own needs. As well, they are often forced to challenge opponents through justification/validation of the rationale for their loved one choosing MAID which can be an exhaustive process, all the while working through their grief coupled with trying to manage their own day-to-day lives. Many have indicated a desire to “protect the patient” from additional stress by taking this all on by themselves.

 

Moreover, the ability of individuals to seek support may be increasingly limited for those who cannot access private counselling services due to cost, geographic location or fear of stigmatization. It is also important to recognize that family and caregivers may be triggered by certain events in the future (i.e., hospitalizations, medical interventions, others’ end of life journey) which can bring about these negative feelings and leave them to seek out support (that may not be available) once again.

 

Bridge C-14 recognizes that the lack of community and social support is a growing concern and is an area that requires further development. The goal of the organization is to address this issue by providing compassionate support in a manner that respects the intricacies of the MAID journey for individuals and assisting them in navigating the complex MAID process. Bridge C-14 will become a community where no one touched by MAID will feel alone or unsupported. We are providing a compassionate and safe place for individuals to share their lived experience and to build meaningful connections with others who can relate throughout all stages of the MAID journey. I invite you to join in on the conversation, to find the support that you are seeking and to experience a feeling of community with others who understand and appreciate your journey.

 

 

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