How My Husband and I Feel About Being Offered Palliative Care
For the first time since my husband, Aubrey, was diagnosed with hereditary ATTR amyloidosis in 2013, his care team brought up the subject of palliative care last week. Was it unexpected? Yes. Were we prepared for this new step? No.
Despite the many challenges we have faced, both individually and as a family, Aubrey and I have learned that resilience and striving to be the best version of ourselves are crucial to tackling this incurable illness. This also means that, no matter what the medical community tells us, we should work to understand their perspective, the treatment options available in our country, and most important, the state of Aubrey’s body, which only he truly knows.
Palliative and hospice care aren’t often talked about within the rare disease space here in New Zealand, so I’ve since taken a closer look at the topic.
According to New Zealand’s Ministry of Health, “Palliative care is care for people of all ages with a life-limiting condition.” The goals are to optimize a person’s quality of life until death and support their family and caregivers into bereavement. This is the least that our healthcare system can offer patients like Aubrey.
The terms palliative care and hospice care are sometimes used interchangeably, but they have slightly different meanings. Palliative care is offered to anyone at any stage of a serious illness, while hospice focuses on end-of-life care. Still, I usually only hear about either when nothing more can be done to treat one of my family members or friends, so they spend their remaining days at a medical facility.
It may sound like I’m in denial when I say that my husband is not quite there yet. He is unwell, and amyloid proteins have taken hold of his body, but until we both run out of treatment options to prolong his life, palliative care seems a bit premature.
Is this the solution for rare disease patients? With no approved medications that can reverse disease progression, it seems we have ended up in the “too hard” basket and are tasked with accepting our fate.
Aubrey and I understood palliative care to mean end-of-life care when the service was offered, so you can imagine what went through our minds. My first thoughts were, “Are they giving up on him? Is he deteriorating faster than we expected? Is death imminent for him?”
Despite the medical team‘s well-intended plans for us, hearing that palliative care is the only option moving forward felt like the doctors were hammering the final nail into the coffin.
More questions flashed through my mind as the team explained what palliative care means for us. All I could register at that point was that Aubrey’s disease is incurable, and palliative care would provide him the support he needs to live the rest of his life with dignity, and without pain, depression, negligence, or deprivation.
Suffice it to say, this is a lot to take in. Whether we will accept palliative care remains to be seen. The stigma attached to this type of care causes me to hesitate to admit that Aubrey might need it. Despite his condition, I can’t envision him receiving palliative care.
At the moment, we must, first and foremost, not view this as the end of the road for Aubrey. It is essential that neither of us feels discouraged, as that could affect our well-being.
As philosopher Immanuel Kant said, “All our knowledge begins with the senses, proceeds to the understanding, and ends with reason. There is nothing higher than reason.”
Note: FAP News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of FAP News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to familial amyloid polyneuropathy.
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