Alan Hieber

As someone living with Duchene muscular dystrophy (DMD) my mortality is kind of like an “elephant in the room” paying rent in my mind. Just a few decades ago, having DMD often meant survival to the age of 20 was not likely. With advances in medicine, quality of life and life expectancy have made significant strides. Now the average life expectancy has risen to around 35 or older in some instances. In spite of this, I’m 27 and the prospect of potentially losing my life within the next 10 years is very unsettling.

With this being an obvious issue the disease presents, providers have the responsibility of being open about it with their patients, especially when they reach adult age. I have discussed this with my specialists in palliative care and the other providers I see. While the transparency about end-of-life scenarios I could experience has been good, there was one recent consultation where I felt the amount of information discussed slightly crossed a line.

This occurred at one of my biannual series of appointments with neuromuscular specialists last February. Usually, I see a single type of doctor at a time, but on this day I had an atypical visit with several health care providers — a cardiologist, pulmonologist, and a social worker. 

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I was told how, from a pulmonary perspective, DMD is very manageable, but cardiac problems are still a common reason for one to die from the disease. I was then told possible scenarios that could play out. One dealt with going into cardiac arrest. It was explained to me that without making my wishes known I would automatically be subjected to resuscitation attempts by paramedics. It was pointed out that if this was to occur, the chance of me being brought back would be low, which meant I might consider whether these steps should even be taken.

It was then discussed that if I made it to the hospital that complications would probably appear. This could involve interventions to my pulmonary function, such as a tracheotomy. With this being a prospect, I was told that my quality of life would probably diminish and the changes could be irreversible. This again presents the dilemma of deciding if I would even want to go through these life-preserving measures.

The team of specialists went on to lay out what steps I could take ahead of a circumstance where my life would be in jeopardy. This might include preparing documents like a living will or being an organ donor. This even continued into a conversation about me having ideas for something I’d want to carry on after I pass. For example, I have thought about writing a book.

The appointment came to an end after a few hours. Having heard about such heavy topics I was left to digest all of it. I recall not having much of an appetite when I got home later that evening. My mind went numb the next few days as I processed the shock I was feeling.

The experience has still left a few lingering impacts on my mental state. Every time I have a weird heartbeat or my heart rate elevates, I can’t help but have a slight sense of panic that what I learned about during the appointment is going to transpire at that moment. There are instances when I have feelings of hopelessness about my future. 

The topics brought up in the conversation with my doctors that day warranted my attention. However, I do believe there are some ways the information could have been dispersed better. The obvious one that comes to mind is that the issues discussed could have been more digestible. This might have been done by breaking up the number of appointments used to go over palliative care planning. Another way to ease the heaviness of this process might have been to notify me prior to the consultation. This would have allowed me a chance to get prepared for what was about to transpire.

On the bright side, I now have a sense of control over my palliative care. Conversing about possible end-of-life situations isn’t something anyone really wants to do, but is probably necessary for anyone to do. Providers just have to be aware of how the methods used to have these discussions with their patients can impact them in the future.