Living with Mortality and Finding Meaning
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Being confronted by our own mortality can bring up a lot of feelings: fear, anger, sadness, helplessness, and few experiences bring us face to face with our own death like a cancer diagnosis. But facing mortality can also be an opportunity to find meaning, live in the moment, and contemplate the mark you want to leave on this world. Attend this program to explore how to acknowledge the inevitable while still allowing yourself to truly live a full life and experience hope. This presentation is in collaboration with NYU Langone Health.
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Living with Mortality and Finding Meaning
- 1. Living with Mortality and Finding Meaning Akash Shah MD NYU Langone Health Perlmutter Cancer Center
- 2. Living with Mortality and Finding Meaning Being confronted by our own mortality can bring up a lot of feelings: fear, anger, sadness, helplessness, and few experiences bring us face to face with our own death like a cancer diagnosis. But facing mortality can also be an opportunity to find meaning, live in the moment, and contemplate the mark you want to leave on this world. In collaboration with NYU Langone Health.
- 3. “In this world nothing can be said to be certain, except death and taxes.”
- 6. Common Emotional Responses to serious illness include: – Facing up to your own mortality – Anger or frustration as you struggle to come to terms with your diagnosis—repeatedly asking, “Why me?” or trying to understand if you’ve done something to deserve this. – Worrying about the future—how you’ll cope, how you’ll pay for treatment, what will happen to your loved ones, the pain you may face as the illness progresses, or how your life may change. – Grieving the loss of your health and old life. – Feeling powerless, hopeless, or unable to look beyond the worst-case scenario. – Regret or guilt about things you’ve done that you think may have contributed to your illness or injury. Shame at how your condition is affecting those around you. – Denial that anything is wrong or refusing to accept the diagnosis. – A sense of isolation, feeling cut off from friends and loved ones who can’t understand what you’re going through. – A loss of self. You’re no longer you but rather your medical condition.
- 7. No “right” or “wrong” way to respond – Give yourself time to process – Do not bottle up your emotions – Be patient with the pace of treatment and recovery Don’t forget to take care of yourself – Be open to change Keeping your mind open may help you to find the positives and better cope emotionally in even the darkest situations.
- 8. Consider Palliative Care Consult
- 9. Palliative Care Role – Interdisciplinary Team Model Chaplains Social Workers MDs/NPs
- 10. Palliative Care Role – Pain and Symptom Management From disease itself From cancer treatments
- 11. Palliative Care Role – Emotional Support Simple Talk Therapy Cognitive Behavioral Therapy
- 12. Palliative Care Role – Advanced Care Planning Health Care Proxy Medical Orders for Life Sustaining Treatment (MOLST)
- 14. – Humor, had a patient who says since diagnosis he started doing stand up – Another with end stage lymphoma who is writing his own book on living with this illness/memoir. – Another man with HIV/Lung Cancer who desperately tried to see every Broadway play he could. How do we live with this?
- 16. Religion and Faith – Studying scripture – Church Services/ – Support Groups – Community
- 17. – Randy Herbert did a study in 2009 where he followed a group of women with breast cancer for 8 to 12 months to determine the relationship between religious coping and well-being. – These results are consistent with other studies showing that negative religious coping predicts worse psychological adjustment. Similar to my first story, having faith is a good predictor of quality of life Positive vs Negative Religious Coping
- 18. Thoughts from people much wiser than myself
- 20. Being Mortal
- 21. One Last Story
- 22. Thank You
Editor's Notes
- Thank you for the introduction. I’m Dr. Akash Shah I also would like to thank the organization for allowing me to speak to all of you out there today who are taking time out of their hectic lives to learn, grow, and most importantly to support each-other in this most difficult of times.
- The title of our talk today is ….. read I’ve Been thinking about this talk more and more lately given the events of 2020. A global pandemic (over 100,000 people dead and the count rising daily), rioting, threats of world war. A message for the audience: Now I know I may look young to be talking to you all today about finding meaning in the worst of times. Im a NJ kid, raised here since I was 2 years old. I decided to study family medicine as I wanted to be able to care for people of all ages/shapes/sizes. I specialized in palliative care because I realized during my med school life that I wanted to spend my career working with wonderful people who happen to nearing the end of their life. I saw all around me that doctors in particular tend to focus on little snippets of the whole person. Everything was detail oriented but often the big picture was forgotten and synthesized down to Creatinines and liver function and functional scores. Hours were spent on documentation instead of at bedside with patients and their families. I once got in trouble because I took too long talking to the patient and family… medicine is more a factory life process where the only things that matter are metrics, efficiency, and patient satisfaction scores. Oftentimes, I am one of the first people they interact with after learning of their new cancer diagnosis aside from their oncologist. I have had this conversation more times than I care to keep track of. I have had this intimate conversation with strangers, colleagues, and even my own family members.
- It was on November 13th, 1789, that Benjamin Franklin wrote in a letter to Jean-Baptiste Leroy a phrase that has reverberated ever since: ….. ******************************I really struggled with the prompt we came up with. The first part, living with mortality is something a bit easier to understand. Since the moment we were born and were first able to think critically, we all have understood that there has been a silent countdown towards the end. We have found ourselves growing older and weaker (sometimes quickly, but usually slowly), we have weathered countless storms (both literal and figurative), and we have all lost family, friends, and other dear loved ones. Mortality is something we find ourselves grappling with constantly.
- Now this does not take away the pain/anger/sorry we feel by getting a life altering diagnosis, but when it comes to enduring pain and suffering, we know that to be part of the human condition. It is not a question of if we will be impacted, but how we choose to respond to it. Desmond Tutu once said, *************************************** I want to start with two stories I hope some you can all relate to. 1- Mr M, mid 50s, African American Male saw 2 weeks ago in the hospital, nagging abdominal pain he thought was acidity/gas/etc for a couple weeks. Ended up in hospital for pain controlled, diagnosed with Stage IV Pancreatic Cancer (median survival 3-6 mos), has yet to start treatment due to pain control. Sitting in PJS which is unusual, pleasant affect, gold chain with cross, glasses. How are you Doc? Starts to open up, talks about faith, his family (1 biological daughter, a nephew and 2 nieces he is helping raise as they don’t have a father figure) says, “I feel like I got jipped man, life seemed like it was just getting good. Worked in real estate but just got offered a partnership and expanded role in franchising opportunity.” Asked how he was coping, “Im a spiritual man, I pray to God. My family is always there to support me. Have to keep going, take it day by day.” Going to keep my faith in God, but not going to let this stop me from living my best life. Im going to spend the rest of my life making sure that my family is well taken care of and knows how loved they are.
- Let me now tell you more a personal story and my families ongoing struggles with this issue. I went off to Phx for residency in 2014, whereas my fiancé and most of my family were in NJ. Few months in, mom was diagnosed with breast cancer on top of her preexisting b/l fibrocystic dz which was painful, spite of risks, we chose a B/L mastectomy and then she had reconstruction and was placed on tamoxifen (luckily no chemo/radiation) Generally speaking, she took that in stride, especially understanding that it was most likely cured (though she hated dealing with the side effects of tamoxifen, luckily, she recently finished her 5 years course). That was a very stressful time in all our lives, esp mom and I was stuck in AZ while my lovely fiancé essentially coordinated her visits and kept me updated. While she struggled with the whole experience, she generally took it in stride due to our amazing family support system and knowing that she likely would not have to worry about this again. Fast forward to my last year of residency in AZ. I somehow had an off day and was relaxing at home watching TV at like 11am when I got a call from my sister. Immediately I panicked as she would never call me at that time unless it was important. ….. Seizures, ICH that masked an oligodendroglioma required a craniotomy and had to be placed on anti seizure medication for a while. This time, she experienced personality changes, anxiety, maybe even depression refusing much in ways of therapy/psych visit. She has been more active, more yoga, staying busy, accepting help more often
- I apologize for this wordy slide and Im not going to read this all out, but Do any of these concerns reflect people’s thoughts either now or when first diagnosed?? These are just SOME of the things my mother/my family and all of you have been struggling to deal with As this community is all too aware, many of these diagnosis come out of the blue, often time when things seem to be going well in life. Sometimes, they seem to an avalanche that keeps piling on top of itself.
- Allow yourself to feel. It may seem better in the moment to avoid experiencing your emotions, but they exist whether you’re paying attention to them or not. Trying to ignore your feelings will only increase stress and maybe even delay recovery. But if you allow yourself to feel what you feel, you’ll find that even intense, disturbing feelings will pass, the initial distress you felt at news of your diagnosis will start to ease, and some aspects of life will even return to normal. Be patient with the pace of treatment and recovery. It’s easy to become anxious as you wait for a clearer picture of what your road to recovery will entail. But scouring the Internet and relying on what can often be inaccurate or scary information will only make you feel worse. When you’re faced with a lot of unknowns, you can still care for yourself—eat a healthy diet, exercise, sleep well—and pursue those relationships and activities that bring you joy. Be open to change. Rationally, no one would consider having a heart attack or receiving a cancer diagnosis as ever having any positive consequences. But it can happen. Some people diagnosed with life-threatening conditions do undergo a change in perspective that focuses them on the important things in their lives—those things that add meaning and purpose. Negative emotions such as anger or guilt can even sometimes have a positive effect, motivating you to meet treatment goals, for example. Keeping your mind open may help you to find the positives and better cope emotionally in even the darkest situations.
- Total Pain theory: spiritual/emotional/physical/existential pain
- Now I want to take some time to very quickly explore our role - another layer of support, mostly here to listen, unlike most oncologists/primary doctors, we have more time to spend with you expert cancer pain management and relief of common symptoms including shortness of breath, nausea, fatigue, loss of appetite, weight loss, anxiety, and stress related to cancer and its treatments. Refer for acupuncture/massage/medical marijuana when appropriate
- Coordinate with SW and psych/therapists to deal with psychological ramifications
- advance care planning, which allows you to express your values and care preferences so that they can be honored should you lose the ability to make these decisions for yourself. We provide personalized, goal-oriented care in conjunction with your oncologist and assist with cancer treatment decisions as appropriate.
- One of the things my mom has been doing is sending our family an inspirational quote many mornings. Helps to know there are other overcoming major and even surmounting obstacles when things look bleakest.
- Mindfulness is the psychological process of purposely bringing one's attention to experiences occurring in the present moment without judgment,[1][2][note 1][3][4] which one develops through the practice of meditation and through other training. Clinical psychology and psychiatry since the 1970s have developed a number of therapeutic applications based on mindfulness for helping people experiencing a variety of psychological conditions.[21] Mindfulness practice has been employed to reduce depression,[22][23][24] to reduce stress,[23][25][26] anxiety. Studies also indicate that rumination and worry contribute to a variety of mental disorders,[40][41][42] and that mindfulness-based interventions can reduce both rumination and worry.
- Religion/Faith is a very strong source of strength for many people dealing with illness. Some people accomplish this by learning/spreading their beliefs and others by relying on faith to shield/overcome their fears. I know that not everyone believes in God, but there are many people who do. Some of you may be familiar with the Old Testament Story of Job, a man who God considered one of his most faithful subjects. In Job, we see a man who God allows to be directly attacked by Satan. God told Satan, “Behold, all that he has is in your power, only do not put forth your hand on him” (1:12). Through Job’s trials, all is lost including his health, his wife even tells him to curse God and commit suicide, but he remains strong and faithful, “Through all this Job did not sin nor did he blame God.” (1:22). Job’s friends give him plenty of bad advice, in rounds of discussion. They mistakenly blame his sufferings on his personal sins rather than God testing and growing Job. One of them was half-correct in that God wanted to humble him, but this was only a part of God’s test. God speaks to Job and restores him. God knows that Job has received incorrect guidance from his friends, “Who is this that darkens counsel by words without knowledge?” God fittingly declares that humans do not know everything. Then He humbles Job by asking a series of questions that could never be answered by anyone other than Almighty God; for example, “Have you understood the expanse of the earth? Tell Me, if you know all this”. God then brings him to an understanding that believers don’t always know what God is doing in their lives. In the end, Job answers God by saying, “I have declared that which I did not understand”. God then blessed Job with twice as much as he had before his trials began.
- I decided to look into the literature to see whether religion had an effect with quality of life in patients, particularly cancer patients. Heres what I found. One thing I have learned and that studies bear out is that there is a difference between positive vs negative religious coping. Positive religious coping (i.e., partnering with God or looking to God for strength, support, or guidance) Negative religious coping (i.e., feeling abandoned by or anger at God) *************************** Randy Herbert did a study in 2009 …… The Major findings emerged: 1. negative religious coping, conceptualized as Cope Anger (i.e., wondering if God has abandoned me and expressing anger at God) predicted worse overall mental health, more depression, and less life satisfaction. Changes in Cope Anger predicted worsening mental health, increases in depressive symptoms, and decreases in life satisfaction over time. The effect sizes demonstrated (i.e., negative religious coping explained approximately 2% of the variance in well-being) were consistent with those found with other coping strategies and health outcomes.30 2. although the early stage patients had improved physical health and depression from study entry to follow-up, cancer stage did not moderate the relationships between religious coping and well-being. These results are consistent with other studies showing that negative religious coping predicts worse psychological adjustment. Similar to my first story, having faith is a good predictor of quality of life
- Man's Search for Meaning is a 1946 book by Viktor Frankl chronicling his experiences as a prisoner in Nazi concentration camps during World War II, and describing his psychotherapeutic method, which involved identifying a purpose in life to feel positive about, and then immersively imagining that outcome. According to Frankl, the way a prisoner imagined the future affected his longevity. Find meaning in the most dire of circumstances. “He who has a why to live for, can bear almost any how.” If you find your why/purpose, you can overcome any chanllenge. You will always have a freedom of choice between a stimulus (accident, receiving bad news) and your response – only thing you can always control is your attitude Quick story from work, as you all know everyone in the hospital was recently overwhelmed. A lot of us are talking to therapists, meditating, etc. The amount of burnout/fear/confusion over the last few months was so overwhelming that many of my colleagues and myself all felt “broken.”
- Met a patient last week in the cancer center who I had no pre-existing relationship with. 44 yo M patient with Glioblastoma patient who was just told he has 3-6 mos. Got consulted to discuss goals with him. So as I mentioned earlier we started by making sure his symptoms are controlled, and what it would mean for him if symptoms worsen and options to treat those symptoms. Then we shifted to quality of life and I will never forget what he said. He told me that, despite everything and COVID, this is the happiest he has ever been in life. Shocked to hear that. He said, due to COVID, I get to spend more time with my family than ever before, especially when I have so little left.
- In the end, having a positive attitude and finding a meaning/purpose are the two things that I have found that give people the greatest chance at coping with the fear, anger, sadness, helplessness that often comes hand in hand with a cancer diagnosis.