Why Douglas Carmichael Advocates For Respite Care Over Physician-Assisted Suicide: Oppose HB1283

I am Douglas Carmichael, a 42-year-old high-functioning autistic adult that moved to NH (after losing my mother to Alzheimer’s disease) when tensions in my family had reached a breaking point.  My mother was my primary caregiver, my emotional rock and my fierce advocate, and losing her has shattered me to this day.  

Navigating the pandemic alongside my mother's declining health, we found ourselves facing a labyrinth of barriers to accessing desperately needed care. The realization that respite care and comprehensive support services (which should be a beacon of hope for all in need) are instead a privilege for a select few was a bitter pill to swallow. This heartbreaking reality compels me to passionately advocate for the expansion and improvement of palliative care services in NH as a compassionate, life-affirming alternative to the physician-assisted suicide legislation proposed in HB1283.

As my mother declined, our family sought support but was met with a disheartening lack of assistance. 'Sorry, we can't order a respite bed for her; her primary care physician has to order it,' was the frustrating response from the DuPage Care Center (a county-operated skilled nursing facility.) The Illinois Department on Aging’s Community Care Program (a program that helps older adults remain in their homes) was inaccessible due to state rules on asset limits. When we turned to DuPage County Adult Protective Services for support, we discovered that our situation did not meet their specific guidelines for assistance. We knocked on every door (with no success) culminating in the home health care/hospice agency stating: “She goes into respite care one week out of every four, or we drop her as a patient”. If it weren't for financial assistance from relatives to help pay for said respite care, this loss of the only assistance we had would have been a devastating blow, leaving us feeling utterly helpless and making the entire situation exponentially more painful. 

This heartbreaking journey not only took its toll on our family’s emotional well-being, but it also precluded me from planning for a future without her. It underscores a critical issue: Medical professionals should never find themselves in a position where facilitating a MAiD (Medical Aid In Dying) request is easier than securing a respite bed for a patient. 

The thought of my mother being pushed towards physician-assisted suicide, with our family in disarray and crucial questions left unanswered, is a weight I can hardly bear. Knowing that any choice she might have been forced to make would have been rooted in a system that failed to provide necessary support only intensifies the pain. Facing the aftermath of her death without adequate resources would have been an insurmountable challenge, deepening the trauma of her loss. As it is, her final words to me (‘my baby, my son!’) are a haunting reminder of the deep love and concern she had for me right until the very end.

This experience highlights my concerns about the potential legalization of physician-assisted suicide in NH. Instead of endorsing HB1283, which could normalize viewing death as a solution, I urge NH legislators to advocate for robust support systems that extend beyond mere 'choices' for the patient to encompass comprehensive support for the entire family. 

Rep. Lisa Smart's stance on the importance of palliative care resonates deeply with me. We must prioritize a healthcare approach that offers vulnerable individuals the support they need to live with dignity, rather than nudging them toward physician-assisted suicide. Reflecting on my mother's decline, I see the transformative potential of comprehensive palliative care and care management services. With professional support, our focus could have been on treasuring our moments together, ensuring my mother's comfort, and emotionally and pragmatically preparing for her loss.

I implore you to contact your New Hampshire senators and urge them to vote NO on HB1283. Demand that they prioritize funding for comprehensive palliative care, respite services, and holistic support for patients and families, ensuring no one faces life-limiting illnesses alone or feels pressured into considering premature death due to a lack of essential resources and supports.

Thank you for taking the time to read my story and for considering this critical call to action.