It is time to have The Conversation

Vancouver Coastal Health (VCH) runs a blog with the name “Up For Discussion” and they recently published an article by their CEO Dr. David Ostrow titled “It is time to have The Conversation” about end of life care. I applaud them for starting discussions about very complex and difficult topics that touch on ethical, legal and other sensitive issues. However, I was disappointed to see that they only really want to have a discussion with VCH staff because no one else is allowed to submit any comments. The tagline reads “VCH’s executive blog for staff”, but why publish it publicly if I cannot be part of the conversation?

Anyway, you guessed right that I nevertheless submitted my thoughts which as expected did not get published. Hence, I decided to publish it here. Below is what I wrote because I believe we should really talk about death in general as part of health care and not only end of life at an older age. The discussion really needs to happen on multiple levels, in particular:

  • Within families so that family members know about the wishes of other family members and can make decisions on their behalf should they not be able to make such decisions themselves any more. These wished might have to be notarized appropriately to eventually avoid problems should it come to an actual decision about life or end of life.
  • Within the health care system to identify how to best support families in end of life situations of any kind.

Submitted comment:

“Death is not something to be taken lightly […] how much work we have to do around death and end of life planning”.

Thank you for posting about the difficult topic of death. The article in general and choice of image focuses on death in older age with a particular emphasis on planning and ethical considerations which is certainly a very important topic. However, I think it is time to have THE Conversation about death in general. The ever growing expectation of hospitals to be places of healing neglects the fact that people die in hospitals. It seems that as a society we have become very uncomfortable with death, talking about it and supporting people who are dying and their families. Health care professionals might need to stop thinking of death as “failure of their own abilities” and instead focus on how they can support families affected by the death of a family member. In many cases health care professionals might play crucial and important roles in supporting families at the time of death of a patient with long-lasting effects on their grief journey. This might be particularly relevant in unexpected and traumatic death experiences. I believe we should put more emphasis on training of medical staff to give them the right tools to fulfill this role which touches on topics of compassion and empathy. Bereavement care and grief support for families, patients and staff in my opinion are important components of health care with real benefits. Traditionally, the focus of a hospital might have been on emergency care and they might not be equipped for long-term support, but bereavement care starts well before the actual death of a patient, i.e. in the hospital at the bedside. It certainly can make a big difference how nurses and doctors talk to and engage with terminal ill patients for example.

While we somewhat accept death as a possibility in advanced age and manage to start conversations about it, as a society we completely fail to acknowledge and talk about death in other circumstances. It is nowhere more apparent than in a death of a baby. Everyone expects life and joy, but all hopes get turned into tragedy in an instant through stillbirth or neo-natal death. As a parent who has suffered through losing two babies in hospitals within the past two years I know very well how uncomfortable people can be with something so incomprehensible which might even lead to additional hardship for affected parents due to isolation and feelings of not-being understood. I do want to give my heartful thanks to the many nurses and doctors who so lovingly cared for our family and supported us. At the same time I believe that much could be improved, especially with regard to bereavement care. But this requires that we stop pretending that ignoring death will protect us from dying and that we start having more of these conversations, not only as a result of old age, but in every scenario where death unfortunately occurs. This should include hearing the stories of patients/families and learning from their experiences.

Help break the silence!

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