Let’s Talk About Death – Occupational Therapy Practice [Transcript]

Let’s talk about death and dying. I think this topic is definitely not talked about enough in our society here in America. Even old age and the processing of aging seem to be taboo. And I think as healthcare workers, many of us (not blaming anyone or any profession or anything) but many healthcare professionals are either not prepared to or not comfortable talking about or managing the topic of death when it comes up.

I will be making a series of videos about the topic of death including the role that occupational therapists have, expectation vs reality and real-world practice in actuality vs the ideal and theory, research, interventions, as well as how to cope with this emotional topic for you, the occupational therapist.

Death is inevitable. Now, this video is not meant to be depressing, and the topic of death shouldn’t be. I know this is easier said than experienced by you or the patient and family, but I think we can all benefit from talking about death, or even what life is life leading up to death. Now ask yourself this, do you feel prepared as an occupational therapy student or practitioner to talk about death with patients and their families? Without getting into ethics, religion, culture, and those things, what general role do occupational therapists play in death? Research of this topic for occupational therapy revealed many great “idealistic” papers and purpose statements, but how much is OT really involved with death compared to say nursing and the palliative care team? Even spiritual care?

One major barrier I think that is a challenge and oftentimes frustrating for the team is the idea of denial. If you remember the Stages of Grief, denial is the first step in the series of experiences that those who are dying or their families experience. After you watch this video, check out my video on the Stages of Grief – the link will be in the description below (hopefully I remember to paste it in).

When there is denial, then the team, such as the occupational therapist cannot directly address the topic of denial. But what if the patient really is dying and on their death bed? This topic is a heavy one that can wear on you and it can be very emotionally draining. So it is important to not address this alone and to involve other professionals in this process – doctors, yes doctors, I know we often feel like many doctors, not all because many are great – such as one hospitalist that I work with, play an important role in this process because of the medical model and their role in managing the health care team. Then there’s nurses, the palliative care team, spiritual care (which has the misconception that you have to be religious, but no, anyone can receive spiritual care to just “talk it out”), psychosocial, other specialists such as oncologists, definitely the family, friends, and others who may be involved in the patient’s care.

Back to denial though, not only can the patient have denial, but it can be even more challenging when family members are in denial that the patient is dying. Anecdotally, they may “compensate” for this or cope with this by venting their frustration (consciously or unconsciously) on staff such as by making unrealistic demands, complaining, making many requests, intervention seeking to preserve life (which is totally fine, but really – at a certain point, do we have a role in saying basically, hey I think it might be time to prepare and kind of give the family a reality check?) Don’t take it personally when family or even staff may get frustrated with you. The key is to be holistic, professional, and to provide what you can in terms of therapy as an occupational therapist. And what this role is can very broad and vague right?

It seems like OTs are equipped to address many aspects of death and dying, but do we really do it? Is it “billable”, do our bosses want us treating someone on palliative or hospice when it may not be productive to our units? Why not just let the palliative care take on this role right? Many OTs take on this stance and subject when it comes and they may discharge them from OT services. Honestly, I don’t know. I don’t have too much experience with this topic myself, but I am learning about it and I definitely think many other OTs are not talking about it enough.

One book that had a lot of influence on me is When Breath Becomes Air by Paul Kalanithi. I am not going to spoil it but this book gives a lot of insight into the topic of death for a neurosurgeon who was diagnosed with cancer and documented his experience. I’ll post an affiliate link to purchase the book in the description. Personally, I think that working in the hospital as an occupational therapist really reminds me of how lucky I am to have my health and wellness, even if it is not the greatest. I am not in the best shape and have chronic back pain due to my spinal cord injury. But I think many of you can relate to this working in acute care, maybe, maybe not, is the daily reminder that all of us are dying. Either from chronic disease, acute incidents such as trauma, or specific conditions such as cancer.

I clock out from working sometimes thinking, man, here I am complaining about first-world problems or inconsequential things in my life when my patients and their families are facing death. A great conversation I watched was between Tim Ferris (the author of the book, 4 hour workweek) and researcher and highly influential Brene Brown. I don’t think they talk about death directly in their conversation but self-acceptance I think this is related because one quote that Brene mentions is something along the lines of society often shaming or diminishing the ordinary and ordinary movements until hard “sh*% happens” – illness and death and loss and the only thing we are begging for at that point is for an ordinary moment. Like to be left alone to spend time with your family to slow down, and reflect and really accept who we are, our situation, what we can or cannot change, and to really – on a philosophical level accept death and what is coming, no matter what your religious or spiritual belief. When I watched this it really hit hard.

It goes back to my feelings of how grateful it is to be reminded that all of us are dying when I work in the hospital. It makes me want to go home and hug my wife, my son, my pets, and appreciate what I have, where I am, and take in the moment and really – not take life for granted, because it may sound cliche, but there are many humans who are suffering or have it way worse than me. I think this is the gift that being an occupational therapist who works in this setting especially can have because it is truly the intersection between function and meaningful life activities and the other side of it – death and leaving this world.

But doesn’t this contradict itself?

I was always confused about how can occupational therapy is about living meaningful lives but death is the end and opposite of it. I don’t know. I may be contradicting myself, but at the very least, it makes me again, grateful for the life I do have. As OT is moving towards the direction of treating the group, population, or community, you can go as far as to argue that OT is addressing the life and meaning for the family of the patient or client who is dying.

All of us have different experiences with death. Some of you may have experienced loss directly with your friends and family and or maybe even dealing with a situation currently. It’s hard. I can’t even imagine how hard it can be because honestly, I haven’t really experienced this myself in my own circle for those who are closest to me, but when I hear about patients dying, especially ones I have worked with and known, it makes me stop and think and reflect and go, damn, oh yeah, death – its literally happening every day, probably every few minutes on this planet.

This leads me to really take action and I highly encourage you to do so as well and not procrastinate and wait. To prepare for death, be it your own, your spouse, or even your kids. I’m talking about things like writing a will, estate planning, having the conversation with loved ones of what your wishes would be such as for burial, how you want to divide your belongings, code status and resuscitation. Life insurance, that kind of thing. Yes, even for your children.

So many times my wife and I discuss cases of very sick or old people who are full code. And we think, WHY? Why are they still full code? What would be the quality of life be for these people if they were to be resuscitated and we do CPR and break grandma’s ribs and they can’t even feed themselves afterward and not have much of a quality of life? Personally, I think It’s really cruel how society keeps wanting to prevent or prolong life to avoid the inevitable when I think when these people deserve to die comfortably and be at peace. I would want the same honestly, if say, my quality of life was very poor afterward. But that’s a heavy topic for another video.

These are all topics that I personally think there is no right time to talk about but NOW. It’s better to be prepared than when things happen, yes even unexpectedly, when you are stressed and emotional, that there is a framework or plan for what to do. For me, it gives me peace of mind knowing that hey, if I were to die unexpectedly, my family would yeah, be very sad, but my affairs would be in place and they would be taken care of and not left with nothing. And this is very important especially if you are the “breadwinner” in the family and bring home the money to support your family. It can be a very sensitive topic for many, even you perhaps, but would you rather have your family mourn you but have money and a roof over their heads or nothing at all because they may get evicted because they can not pay the rent or mortgage or property tax or afford basic living expenses.

Something to think about is, say something was to happen to you, do you think your family would be just okay and show up to work the next day? Or if your children were to die, would you be able to just show up to work the next day? Life insurance, yes even for your kids – may be a good option for you. Now don’t get me wrong, I am not affiliated with or promoting life insurance for personal gain, but as many Americans may be living paycheck to paycheck, it can lead to a lot more stress for your partner, spouse, family, and kids if something were to happen to you unexpectedly.

So I highly recommend that you hire an estate planning professional or at the very least, think about and even write down what you what and discuss this with your family after watching this video, even if it may be hard for them or even for you to conceive the notion of you dying. It is a good idea to think of a plan for every possible scenario. You dying alone. Your partner dying. You and your partner die. Your children dying. All of you dying. Personally, it is kind of morbid, but when my wife and I did our estate planning, it was kind of fun to think about how to divide our assets with our friends and family if we were all to die. Like Oprah, Here, you get this much, and you get this much. Here’s another X amount of dollars, why not? But in all seriousness…

Hopefully, this video gets you thinking about death. And if you are morning or experiencing death either for yourself or family or friend, there is definitely a wealth of resources out there, yes for free, even on the internet that can help. Books you can loan, videos or movies you can watch, people you can talk to.

The national suicide prevention lifeline is 800-273-8255. Take care of yourself, each other, and thank you for watching. In the next video on this topic, I will be talking about death and the role that occupational therapy has in palliative care, hospice, and beyond.