Michelle Knox Reminds Us It’s Good to Talk About Death

Does anyone personally know Michelle Knox? Because we’d like to be friends with her. We have much to talk about. Listening to this story about her on NPR, we had a classic NPR “driveway moment.” We laughed out loud along with a little bit of car-crying.

We wanted to know more. It turns out that Michelle works in finance in Sydney, Australia. She is a traveler and blogger who lost her father in 2017. Her personal experience in grief and dying motivated her to research how others talk about and prepare for death. She found that it’d be a lot easier to live if we talked about death now while we are healthy.

Listening to her TED talk is a master class in how to talk about death in a straight-forward way while even being funny. She reminded us of what we’ve discussed before about the benefits of planning ahead. There are so many overwhelming decisions to be made when someone dies, as she points out: “coffins, headstones, headstone wording, headstone font size... all while sleep deprived.” It gives our loved ones comfort to know in advance what we would have wanted, and takes some of the burden off them in making the many arrangements. Don’t we all want to give our loved ones that small comfort?

Michelle hits on our other favorite topics, like how people don’t know what to say to a friend in grief and our cultural avoidance of death.

Check out  www.grumpycats.com  for more about grumpy cat

Check out www.grumpycats.com for more about grumpy cat

She also uses the term “good death” because her father died as he wished: at home, surrounded by family, peacefully. We’ve written about the concept of a “good death” before. We could relate when Michelle said that it was a privilege and gave her peace to help her father follow his wishes to achieve a good death. We’ve also taken notice of people out there working to change our avoidance culture and help others achieve a good death. There was recently an interesting opinion piece in the New York Times by one of these amazing humans about people’s desire for nature at the end of their lives. Even with all the wonderful people working in palliative care, it still takes some planning on our part: reflect on what you consider a good death, and tell your loved ones, before it’s too late.

We are proud that our sister achieved a good death. We hope for the same for ourselves. Towards that goal, we are writing more of our wishes down. Michelle’s story was a great reminder that we should think through all the details, including wishes for burial and memorial services. She brings up many important considerations like: “Do you want to be near the ocean, or in the ocean?” We believe, as Michelle does, that planning ahead doesn’t need to be scary or sad. In fact, we might make it “fun” by opening a bottle of wine!

In Search of a Good Death

Another article about hospice, and again we find ourselves nodding along in agreement. This recent opinion piece in the New York Times rang true.

At the end of life, things can fall apart quickly, and neither medical specialist nor hospice worker can guarantee a painless exit. But we were told a palliative expert would be at my father’s bedside if he needed it. We were not told this was conditional on staffing levels.
— Karen Brown

The author, Karen Brown, shares her family’s in-home hospice experience and their best efforts to care for her father who was dying of pancreatic cancer. It is a difficult read as she describes her poor father’s uncontrolled pain, the lack of support from hospice due to staffing shortages and, as a result, their stress as they fumbled through trying to alleviate his pain.

We have discussed the challenges of in-home hospice before, as well as the significant commitment placed on family members, in response to the same Politico article she references. We have also discussed the barriers to hospice enrollment that we experienced, and explained that we wanted the support from hospice and believe that we would have benefited from earlier enrollment, similar to many families who report dissatisfaction when they are referred to hospice too late. Although we are proud that our sister was able to die at home, at peace, and surrounded by family as she wished, we felt uneasy at times without any hospice visit during the last 72 hours of her life.

We relate to the feeling that hospice did not live up to all of its promises. In our past post, we noted that, according to the National Hospice and Palliative Care Organization, “at the center of hospice and palliative care is the belief that each of us has the right to die pain-free and with dignity, and that our families will receive the necessary support to allow us to do so.” Looking back at this statement, it sets expectations that were not met in either of our experiences. Interestingly, the author reached out to this same trade organization in her piece, and their response was that “good hospice experiences ‘far outweigh’ the negative ones.” Wait, so, the author’s father’s pain crisis during his last hours would not outweigh someone’s nice comments about their primary hospice nurse? Is it acceptable to assign relative weight to a negative hospice experience, or to get it right on average? When we were having our babies, we didn’t hope that our OBs would “mostly” get it right, that the positive birth stories would outweigh the negative ones. Why should it be different for us and our loved ones at the other end of life?

Due to the negative stories that we have heard and read, we wonder if the majority positive responses to surveys about hospice are representative. Perhaps those who were happy with their hospice experience and want to share their gratitude are more likely to respond, while those with negative experiences are too sad to make complaints or answer surveys, just as Karen Brown felt. In any case, we share her perspective that, overall, family caregivers should be better prepared for reality when taking on in-home hospice care. Hospice may not be there, holding your hand and walking you through the end. Therefore, family caregivers should be better trained to handle death independently, and we believe that would lead to better experiences with loved ones in their final moments.

Ultimately, the negative experiences should be unacceptable, no matter the average feedback. We should place value on each individual achieving a “good death.”