KO: I wanted to begin by disclosing that I had the great honour of working with Cheryl in hospice care as medical social workers and grief counselors for several years. Her compassion, intuitive empathy and healing manner taught me invaluable lessons on how to approach death and grief.
I know that since our time working together you have been very busy. Can you talk about your book “The Final Dance: What the Dying Teach us about Embracing Life?” How you came to write it, and what you learned through the experience?
CD: Thank you for your kind words, Kenn. I too felt honored to work with such a compassionate loving man as you.
It took me years to write The Final Dance. Not years of writing but years of not writing and talking about wanting to write this book. Honestly I kept getting in my own way. I would start to write and then fear would come up. I would ask “Who am I to write a book about dying?” I felt a lot of resistance. Part of this was because the experiences I had with my hospice patients were Sacred and I did not want to do anything to dishonor those I had the privilege of working with.
But as much as I tried to talk myself out of writing The Final Dance, there was this nagging voice saying that it was important to share these stories. I feel honored to have had the experiences I have had. And realized that those of us who work with the dying have a unique perspective.
KO: Can you describe that perspective more?
CD: Most people experience a handful of deaths in their life. And more and more people are sheltered from the dying experience. But as you know Kenn, those of us in Hospice experience death on regular basis. Because of this I found myself seeing patterns in people’s dying. As well as patterns in what they talked about. What was important to them. In fact, as a counselor for the dying we often have conversations that no one else is comfortable having. Patients try to protect family members by not talking about their dying or family is in denial and don’t want to talk about it. It’s a difficult subject. Especially if the person who is dying is someone you love. Because of this I was blessed to be the one they confided in.
In The Final Dance I share some of these deep, rich conversations. Conversations about regrets, about what made them feel their life was successful or not. Being at the end of life gives people a unique vantage point and a big portion of our time is spent allowing our patients to do a life review. What were they proud of? What regrets do they have? What accomplishments mattered to them?
KO: And what did you discover?
CD: I can tell you that the things people were proud of rarely had anything to do with the amount of wealth or possessions they acquire. It was about experiences they had had, relationships they had nourished, risks they had taken to do what they loved. I once worked with a man who told me a year before I met him he had been given a year to live. He went on to share that the last year had been the best year of his entire life. The terminal diagnosis allowed him to drop any pretenses, to take more risks, to do what brought him joy without apology, to speak his truth. These were the types of lessons I share in The Final Dance.
Also, laced throughout the book I share the many supernatural experiences I, my patients, and their families have had around their dying. As a grief counselor I’ve heard hundreds of unusual experiences from family members after their loved ones deaths. Convinced that their loved ones had reached out from beyond the grave. Prior to my work with hospice, I would have described myself as agnostic. But after 19 years of working with the dying I can tell you that I have no doubt that there is life after death. In The Final Dance I do not try to convince people of this. I simply share my experiences and the insights gained from working with hospice patients and their families.
KO: We are living through a pandemic which has taken so many lives prematurely. There are also other factors which complicate grief right now, like loved ones who are unable to be at the bedside of people who are dying of Covid-19 due to restrictions. I am also thinking about healthcare workers, including cleaning and delivery staff, who are affected by this. What are your thoughts about the pandemic and how it relates to your experiences with death and dying?
CD: It is painful to witness and hear stories about so many who have lost their loved ones to COVID-19. Especially, the fact that they were not able to be at their bedside at the time of death. I know from my hospice experience how important being with their loved is for many friends and family. The thought of their loved one dying alone will likely complicate their grieving experience. Wondering how they felt moments before their death. Were they scared? Did they suffer? Did they understand that their loved ones didn’t have choice about not being there?
KO: Talk more about complicated grief and how it may manifest.
CD: Bereavement Counselors are often assessing for “Complicated Grief.” When a client is diagnosed with complicated grief this implies that they may have a more difficult time going through the grief experience. That a normal grief experience has been complicated by other issues. For example, prior to COVID, complicated grief could be a result of unresolved issues (such as an estranged parent losing their child prior to healing that relationship, or a suicide). I suspect that many who have lost someone to COVID while they were in the hospital may have a more difficult time. When a friend or family member at the bedside of their loved one in the last days, it is an opportunity to say what is on their hearts, to make any apologies, to tell them how much they mean to them. It is also an opportunity to see that their loved is not suffering or to intervene on their behalf if they don’t feel they are comfortable. Those at the bedside are able to support each other through the process. I have witnessed much healing between hospice patients and their loved ones in those last days. With COVID patients, people often do not get this opportunity.
There are other factors that may also negatively impact how family and friends grieve when a person dies from COVID. If they were the one who exposed their loved one this could result in a tremendous amount of guilt. As you know we were getting mixed messages about COVID and there were many who do not believe it existed or felt that it wasn’t as serious as media was implying. Because of this many people were not careful. Or they may have survivors guilt because they lived through getting COVID and their loved one didn’t.
Another factor that impacts people who have lost someone to COVID is the isolation that many are experiencing. Due to the need for social distancing, friends and family are left alone to deal with their grief. Unable to hold or physically comfort each other many people feel very alone in the world as they are navigating the grief experience.
KO: Yes, loneliness and isolation seem to be major issues that complicate how we deal with loss and grief. Unfortunately our mental health often gets put on the back burner in times of crisis. This pandemic is revealing that truth in stark ways.
CD: I recently became aware of one other issue that is not spoken about. There are patients who go into the hospital and survive and are released home but are traumatized by the experience. These patients are often on the same floor, sharing a room with other COVID patients who don’t survive. I talked to one patient who had 3 different roommates die while she was hospitalized with COVID. She witnessed people suffering at the end. Felt their fear. She had nightmares after this. Needing to process all that she experienced. Just as many of our Veterans coming home from the battlefield do, she was experiencing Post Traumatic Stress. From all that I have heard, I would say that our hospitals have turned into war zones and have much of the same dramatic affects on those who survive.
This also applies to the nurses, doctors, social workers and other hospital staff who are caring for COVID patients. They too are experiencing Post Traumatic Stress. When the outbreak first started there was uncertainty with how to deal with it and many healthcare professionals witnessed people suffering, unable to breath, afraid and alone. They also found themselves over and over again being the one who held a patient’s hand while they took their last breath so they didn’t have to die alone.
Many of them have also seen fellow co-workers contract COVID, some who later died. I have a friend whose daughter is a nurse on a COVID ward and had three small children at home so chose to live in a camper outside her house for fear of exposing her children and husband. For months she has not interacted with her children in a meaningful way because of this.
KO: It really seems to be creating a generational crisis as well, with children being isolated from parents or grandparents, and vice versa. What else have you been seeing in your work with patients, family and staff?
CD: Another way that the medical staff are being impacted by the Virus and the high number of cases is what’s called compassion fatigue. I have been feeling some of this myself. Compassion Fatigue is when a person is so saturated with experiences of others suffering that at some point they either break down or shut down. They are often experiencing physical, emotional and spiritual exhaustion.
When they shut down, they become numb to peoples pain in order to deal with all that they are experiencing. When they break down it becomes difficult to continue to function. They reach a level of exhaustion where they don’t feel they can continue doing this work. We have seen those who breakdown on facebook posts crying, needing others to know how traumatic this experience has been. Those who have shut down are not as apparent. It might look like indifference or a staff member just going through the motions. Patients become numbers and it is difficult to connect with the person who has shut down.
Either way, compassion fatigue can impact their ability or willingness to provide good care to patients and their families. They have reached their threshold. The affects of compassion fatigue can spill over into their personal life as well. They may find themselves unable to empathize with others or feel the need to disengage with their own friends and family.
All of these factors have a tremendous impact on healthcare professionals on the frontlines. This includes those who clean the rooms of COVID patients, deliver their meals while putting themselves at risk, EMT who bring them to the hospital. They literally have been at war with this invisible enemy. And with war comes trauma much of which has just begun to surface.
I currently work in Home Health and visit seniors in their homes. As time has worn on, people are less understanding about how the Pandemic has impacted services available to them. They are tired of being careful, more demanding and irritable. They are fed up with what is happening. I am seeing first hand the impact of a year of social isolation, fear and anxiety. I have seen patients decline physically and mentally as they spend more time alone in front of a television set. Which feeds into their fear even more as they listen to stats and hear about the rising number of deaths.
KO: What do you think will need to be done to address all of this psychic and societal trauma?
CD: There will be much work to be done to heal the damage that this time has caused many. Some damage is irreversible. But it’s important to note that not everything about the Pandemic has been detrimental. This time of slowing down and isolation has put into perspective what matters in life in a very dramatic way. People are longing for meaningful connection with another, to be held, touched. There are those whose jobs have been impacted. Working less (or not at all) has given many who had gotten out of balance an opportunity to pause, and look at what really mattered to them. Many people began evaluating their career choices or how many hours they had been working. Realizing that they could live on less and how being home positively impacted their children or their own well being. They often didn’t realize how much stress they were under or how unhappy they were until they were forced to step away. It gave people an opportunity to explore other options.
As we rebuild our lives, and our economy I hope that the lessons learned during this historic and incredibly challenging time propel people forward, making them aware that they can make different choices. May the realization of how fragile life is and how quickly things can change be a lesson we take into our futures. Making meaning out of the madness we have all encountered. My hope is that this time has served to wake people up to their lives.
We hope you have enjoyed this conversation between Cheryl Deines and Kenn Orphan. If you would like to order a copy of Cheryl’s book please go to the link below:
Kenn Orphan is a writer, artist, antiwar and anti-capitalist activist, hospice social worker and radical nature lover living in Halifax, Nova Scotia. As an independent writer and artist Kenn Orphan depends on donations and commissions. If you would like to support his work and his blog you can do so via PayPal. He may be contacted at KennOrphan.com.
Previously published on Kenn Orphan, Feb. 15, 2021
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