Dark days in Palliative Care  – The importance of intentional self-care

28 comments

I love my job as a Palliative Care doctor.

There is nothing that I look forward to more on a Monday morning than meeting with our team, solving problems and helping to relieve suffering in our patients and their families.

It compels me out of bed early and is the only job that I see myself doing until my wife or body tells me to stop.

I’ve never found a speciality in medicine that engages my passion for helping a wide cross-section of people, love of pharmacology and the joy of making a difference when it matters most to many.

But the most common question I encounter when I meet someone for the first time is,

“Palliative Care? Doesn’t working around death and dying make you sad or depressed?”.

The truth is, it doesn’t.

I do empathise and sometimes I cry (often actually ) it is my release and human to experience emotion)

For many nurses and doctors working in Palliative Care, this is our calling, our found passion.

Our work in death and dying is how we find meaning in life.

Most importantly beyond religion and spirituality, we have found a way to deal personally with death, which allows us to give ourselves fully to the care of the dying.

The one thing that I‘ve noted about those who love their work in Palliative Care, is the sense of meaning and the joy they feel in providing hope and relief for those who are suffering.

But not all days are the same.

There are dark days in Palliative Care, days which you’d rather forget and ones that live in your memory, uncomfortably forever.

However, the one thing that you must know is that we don’t blindly enter the world of the dying with little protection for ourselves.


The practice of intentional self-care that I’ve seen in the lives of the pioneers in palliative care is abundantly clear and built into the fabric of their lives.

We understand that we will hear stories of loss, cries of regret that are powerful, see suffering and total pain that can be unfathomable and be engaged in conversations that actively avoided by many.

Recently the one thing that has brought unease in my spirit, is the increasing number of young people with cancer and end-organ failure.

Dark days are inevitable in Palliative Care, but it is how you choose to move forward and the safeguards that you’ve built into your life, that determine your longevity and legacy.

Photo by Arto Marttinen on Unsplash

The light will shine

We had a dark week not too long ago.

There was little laughter and jokes at each others expense.

We had two young patients die and we were dealing with several patients with difficult symptom issues, family distress and difficult decisions to make.

The air was thick with tension.

Sometimes there are no words but silence.

In the midst this, we all acknowledge that in our small office, it is:

A safe place to express emotion.

A judgment-free space to express our doubts and fears and complaint.

An environment where ethical debate can occur.

A culture that expects you to take time out for yourself regularly.

The one powerful aspect that I am learning about in the practice of good palliative care is that it takes maturity, wisdom and rest that only comes from self-reflection from self-care.

I have learned a great deal about myself in the last seven years in being a country General Practitioner.

My vulnerabilities — Shame and guilt that I carried and how this affects me daily.

My weaknesses — Areas where I struggled and needed grace.

My energy levels and needs for replenishment — The essence of intentional self-care.

My beliefs and understanding of death — The cornerstone of Palliative care practice

My life philosophy and who I’ve been created to be — A servant leader for Almighty God who solves problems and relieves suffering.

How I manage my intentional self-care

Underlying everything that I do in palliative care is this thought and presupposition about my health and wellbeing.

“I can only care for others if I make it my priority to care for myself first”

In other words, as I grow as a Pain and Palliative Care professional, I need to become an expert in self-care for myself. I need to know the drivers of my physical, emotional, spiritual and psychological energy states and how to replenish them continually.

One common trait of our leaders in Palliative Care who are leaving a lasting legacy, is their commitment to and the place of importance that rest and replenishment plays in their lives.

How futile does it seem to sacrifice your health and wellbeing at the altar of work and care for other people and not yourself and your family?

To me it is madness because of this:

Once you’ve tasted good health, replenishing relationships and happiness that you’ve created through making space in your life for rest……you will NEVER go back.

I exercise every day because it creates energy within me and makes me feel unstoppable.

I have every Saturday completely OFF (minus those that I have to be on-call) to disconnect and do things that make me feel happy and replenish me because this creates margin in my life and restores my stores of energy.

I ensure that Kylie and I connect and talk every day and take one break alone
by ourselves EVERY year because it keeps our marriage strong.

Kylie and I arrange one epic holiday every year with the boys because this our time to experience the world together but more importantly that than, it gives me something to look forward to and anchor my year.

I take time out every month to connect with my spiritual mentor who speaks into my life about my marriage, parenting the boys and my struggles because this self-reflection is important to keep me focused on who I am as a man.

I debrief regularly with our nurse manager and my clinical supervisor about the difficult cases we encounter because their perspective on my performance and the larger vision of palliative care is valuable.

Can you see how much this all means to me?

The desire for my work life, more than anything else, is to serve dying patients and their families with my best.

To do this, caring for myself, comes first.

Practising self-care is intentional and required by every person on the frontline who deals with raw unfiltered humanity.

It is necessary for those who want to remain passionate and effective in their mission to serve.

I will never go back because to lapse into apathy and self-neglect as a palliative care professional will not just be detrimental to my health, but to that of my family’s and my patients whom I have been called and purposed to serve.

Photo by Annie Spratt on Unsplash

How do you deal with dark days and sad cases?

It is normal to feel for your patients and desire to bring comfort to them.

Let your heart be open — don’t hide your distress.

Its okay not to be okay. 

Before Christmas, I shared with our Palliative Care Coordinator that I wasn’t okay. She’d said something in passing that triggered an unexpected emotional response in me.

“This is likely to be their last Christmas”, she said, referring to a group of our patients with children a little older than mine.

My chest tightened and stomach churned and tears filled the corners of my eye.

I wasn’t okay with that thought and it circled my mind for days, finding no rest and meaning.

As we were about to start our clinic, I shared with her how much this thought had affected me and expressed my emotion.

I couldn’t change their prognosis, nor could I make them live longer. I had tried to wipe this thought away, but it had stuck close to my heart as I thought of MY young children and the joy of Christmas.

Hiding your emotion over time is destructive to your life energy and will eventually lead to you being depleted and broken.

There is no way that you can be an effective palliative care professional if you don’t allow your heart to be softened by the stories of your patients.

With this in mind, I’d like to share with you an important thought that I was introduced to by my mentor, who counsels hundreds of people a year, often in a state of great despair. It is something that I am learning to practice and reassuringly seeing unfold in my work.

You are responsible for yourself + your marriage and your children (if you any).

And

You are only responsible to your patients.

“For” and “to” are two extremely important words to understand in context.

We are responsible “for” our families, relationships and lives because this is what remains when work is over and what matters most at the end of life.

Conversely, we are responsible “to” our patients when were are at work, engaged in professional practice and giving them our best knowledge, skill and energy. We are also bound legally by our clinical actions.

However, when we leave work, we should be no longer responsible “for” our patients in our minds and hearts.

This is because we sometimes cannot change our patient’s trajectory, their thoughts and feelings about their disease, their family’s distress, their acceptance of the disease and most importantly, their perceived suffering.

We can try, but sometimes it cannot be changed.

This means you carry the burdens of your spouse and kids and your inner world with you wherever you go, but not those of your patients, unless you purposely allow it.

This is easier said than done and it takes practice to disengage, something that I am learning.

When you work, you do so with excellence, to the best of your trained ability and experience, but that ends when you leave the hospital, hospice or care facility.

We had a clinical debrief a few months and I learnt something profound from one of our long serving hospice volunteers — a beautiful witty retired Scottish nurse.

As she leaves the Hospice after each volunteer shift, she physically pretends to take off her “hospice jacket” and brush “the worry and sadness away” and puts on her “home and outside coat”.

What she is doing is a clever habit that is mentally engaging her in a ritual that helps to reminds her that “work has finished”.

Yes, sadness exists and broken bodies are getting closer to ultimate healing in death, BUT in this powerful ritual, she is setting the intention that “work has finished” and readying her mind, body and heart to re-engage with her family life.

This may not seem profound to you but it has been life-saving to me, my family and my wellbeing.

Brendan Burchard taught me in his book “High-performance Habits” that high performers “set intentions” about what they would like to see and achieve. With this in mind, I started to set the following intention, each time I arrived home after work.

“Work is over, I set the intention of presence, peace, fun, laughter and hope”

With my eyes closed and a few mindful breaths in my car in the hospital carpark, I set this intention. This reframes my thoughts and sets my mind on what to expect at home – usually mealtime chaos, but also my lovely wife and sanctuary of Ramachenderan home life.

Ramachenderan’s 2018. Photo: sullivanandcophotography

Forward we go!

The practice and study of intentional self-care and learning to become a master in caring for myself is something that I am very passionate about.

In the last year, I have begun to share my thoughts to audiences about ways that health-professionals and anyone engaged at the front-line of raw humanity can intentionally build self-care into their lives and thrive in their chosen field.

If you would like to know more, please send me a message or leave a comment, I’d love to hear from you and your story, as I have so much more to learn.

Thank you for reading and please remember to be kind to yourself.

Live intentionally.

Love relentlessly.

Enjoy your health!

Dr. Jonathan Ramachenderan
@thehealthygp

28 comments on “Dark days in Palliative Care  – The importance of intentional self-care”

  1. Hey John

    Thanks for sharing.
    Your words definitely resonate some of my self reflections of working in a health service industry where avoided conversations take place. I’ve realized that just listening can be healing and help their recovery especially those with chronic pain.

    Definitely something I learnt and still learning to apply about who I am responsible “for” and “to.” Even amongst who I would call family (extended) I realized that it is so important to be intentional about this as it can be blurred with unknown expectations or assumptions related to traditional family upbringing, generational culture. Not saying these are bad, but it does present challenging to negotiate because they are “family”.

    Love and big hugs to Kylie and the boys!!

    🙂 Lara

    Like

    1. Lara! Thank you for taking the time to read my article and comment, I am so glad.

      Yes “for” and “to” really blew me away when I started to think about it. The extended family aspect adds another complexity, especially when we take into consideration culture. But if it is starting to disturb your peace, I think the “for” and “to” line may need to be declared.

      With regards to listening, it is such a powerful part of the therapeutic relationship. I learnt last year about the socio-psycho-economic-bio method of addressing patient care and management in chronic pain. And the only way to actually place a person and learn about them separate to their pain, is to listen and allow them to safe space to talk.

      Like

    1. hi Amy, thank you! I am so glad that this article spoke to you and please do share it!

      As a group, we love and are passionate about serving our patients and their families at the end of their lives, but sometimes (as I know all too well) we save the last for ourselves and our families. Being intentional and almost religious about how I spend my time refuelling and replenishing myself has been the one thing that reassures me about having a long career in end of life care.

      Thank you Amy, for taking the time to read, comment and now share it.

      Like

  2. This is one of the best articles I have read about the importance of self-care and separating work from personal life. I am an oncology nurse CNS and manager and I plan to share this with all of my staff and colleagues. Thank you!

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    1. Amy, thank you! Wow, I am honoured. Please do share it, as it has changed my life and helped me become intentional about how I use my time and not sacrificing my best years with my young family, health and wellbeing at the altar of work. I think a refuelled and replenished nurse and doctor are a force to be reckoned with!

      As I started to apply this to my life and work, it really helped me and as I shared it with our nurses in the region, they found it helpful too! The next part that I need to write about is putting together a self-care plan addressing the four areas of energy in our lives. Thank you again for reading and kindly commenting.

      Like

  3. Thank you for this article. So much truth in it. As a retired hospice RN, I know all too well the need for self care. After 40 plus years in the medical field I am now finding some time to be intentional in doing things that bring me peace and joy.

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    1. Oh Marilyn I am so glad you are finding the space to do this and be intentional about it. Also, thank you so much for your care, work and wisdom in caring for those at the end of their life.

      You know, much of my self-care was learnt by accident after it was needed after I burned myself out as a young GP. Entering into Palliative Care work, I was a little wiser and intentionally set out my days, weeks, month and years. Also, my wife hassles me too and knows when my energy is getting low.

      Marilyn, thank you for reading my article and taking the time to comment!

      Like

  4. Hi John, you have an incredible way of expressing your thoughts. Thank you for sharing. I don’t do too much work in palliative care, but do spend a lot of time in group homes and with terminally ill patients. You are clearly intimately passionate about your work and yet you manage to prioritise self-care which is both rare and commendable. I especially connected with the idea of time to yourself, time as a couple, and time with kids. Much to learn from you my friend.

    Like

    1. Dear Jas

      Thank you! Do you know what? Working in aged care stimulated my passion for palliative care! It was from here that I decided to undertake the PEPA program and then attended an ANZSPM conference and thought “these people think like me! Ive found my tribe!!”. The Clinical Diploma was the next step and I went “all in” late last year.

      I think the ideas around self-care is known but not always so diligently applied. I found the work very overwhelming at times and some stories never found rest in my head. But, having an intentional self-care practice which addressed the four energy sources in my life (psychological, emotional, physical and spiritual) was a game-changer for me. I tentatively share my “build a self-care plan” talk last year to a group of aged care nurses and carers and they really found it useful.

      Thank you so much for taking the time to comment Jas, I really appreciate it and it means a great deal! I am sure that we will meet!

      Like

  5. Thank you so very much for this article. I am a Registered Nurse and feel passionate about Hospice and end of life care. As of yet, I have not pursued this in my career. Your writing has ignited that desire and encouraged me to look further into this.
    Sincerely,
    Kristine

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    1. Hi Kristine, thank you!

      Palliative care is a wonderful speciality and involves many facets of nursing and medicine. I’ve found that the learning from my patients and their never stops and there is deep wisdom at this stage of life. I would wholeheartedly encourage you to pursue this. I am so blessed to work with a very versatile and high performing team who are always keen to share their knowledge with me and also let me debrief and “let it all out”.

      I am so encouraged by your message, thank you for taking the time to write to me.

      Jonathan

      Like

  6. Today marks my 11th year in Paediatric Palliative care. I’ve been nursing for over 15 years and still feel so passionate about Palliative care now, as I did 11 years ago.

    I read this article yesterday and it was so thought provoking. I have since shared it with my colleagues….

    Thank you for your honesty; it’s ok not to be ok! Taking the time to care for yourself is just as important as caring for your patients.

    💜

    Like

    1. Wow Gemma, thank you for taking the time to comment and read my article.

      I’ve found tremendous peace in being honest with being very open with my colleagues with the patients that I am struggling with and taking the time to debrief. I’ve seen this modelled by our senior nurses and doctors who have invaluable not just in their clinical teaching/practice but also the way that they care for themselves outside of work.

      As a newly minted rural GP 7 years ago, I burnt myself out very successfully. From that point of learning, I entered Palliative Care work with the understanding that it wouldn’t be always rosy and that being intentional about my self-care, especially addressing the areas in which my energy was easily depleted, was very important.

      Thank you Gemma.

      Like

  7. Thank you for sharing your thoughts on this subject. I retired a few years ago as a Social Worker on our Palliative Medicine team. I can relate to the feelings you share. This area of medicine has always been my passion as a social worker even before we had a team. I so miss this work and you have reminded me of the wonderful experience I had. There is such growth in the spiritual realm and personal growth. I always felt it an honor to care for this population. Thank you for reminding me

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    1. Hi Susan, thank you for taking the time to read and comment! and also thank you for your deeply meaningful work and contribution.

      I very much understand what you mean – my two week “do nothing but have fun” holiday ends today and I cannot wait to work with our team and see our patients. Its the team that makes it better, their perspective, working fast and slow to serve our patients but more than that, their support when you’re “not okay”.

      It is interesting that you mention growth in the spiritual and personal realm, because that is what I found! I’d worked in various generalist medical fields but never felt the personal and spiritual challenge that I found in Palliative Care. I am so happy to have this space and the work remunerates me more than simply money, the wisdom I learn is priceless.

      Like

  8. Dear Jonathan,
    I am a busy GP with an interest in Palliative Care and also GPSi in substance misuse. Recently these fields have collided in the case of one patient, but that’s another story.
    I loved what you had to say. It really resonated with my own personal reflections over the last 3 years. In my case, I’ve been trying to articulate what it means to be a true professional. Easy and trite words, but for me, they now mean so much more – how to see myself and my own skills, doubts, needs, hopes, fears, experiences, friendships, relationships, lonelinesses, search for God, self-recrimination when I fail, simple joy in who and what I love, just BEING HUMAN – all in the context of my work. I’ve started to come to see that everything, truly, can be grist to the mill of being an excellent, giving individual. It all needs to be brought to the table. Then, and only then, can one start to develop the poise that is required in our kind of work (perhaps any work). Only then can we really be simple, and true, to ourselves, our God and others.
    What you had to say about family is absolutely right, and we so often need to be reminded of it. In fact, it was my wife Alison who sent the link for your article to me 🙂

    Blessings to you and your family, and do keep speaking out. Health professionals desperately need to hear this sort of narrative, and to connect with it.
    David Davies

    Like

    1. Dear David, thank you so much for reading this piece and taking the time to very thoughtfully write to me.

      The one thing that I love about what you wrote and you probably felt too was the beautiful release in being able to convey those very raw and emotive thoughts.

      Practising as a Palliative Care and as an Addiction medicine doctor brings us close to raw humanity, the broken, the depraved, but all created in the image of God. Nothing makes you examine your life more than treating and being closely involved in the lives of people who are truly suffering, or have made poor choices or are suffering injustice.

      I don’t think we can enter this world without protection for ourselves if we truly want to leave a legacy and make a difference. I often have an image of myself as a warrior facing the stressors and difficulties of our speciality, BUT only doing so as one who is intentionally well trained physically, intentionally well rested mentally (psychologically and emotionally) and with a grounding in a force larger than myself ONLY due to the intention paid to this area – something that I’ve learned the hard way!

      Thank you so much for sharing your heart with me, it truly was a gift to read your words.

      Like

  9. Dear Jonathan
    Thank you for your truthful and elegant words. As a hospice nurse for 20 years now, I feel it is important to help those who come into this work prepare for the challenge of ‘shutting it off”. Those who don’t work with patients and families during this sensitive and intimate journey don’t realize that the issues you deal with during your 9-5 day, don’t just turn off. Even though you may be engaged in your own life/events, those souls are tucked away in the back of you brain. Subconsciously, you are hoping they are comfortable, safe and peaceful. This work is so compassionate and rewarding that clinicians need to actively work at creating a meaningful life away from it. I look forward to sharing your article with my coworkers and new hires.
    Be well,
    Angie

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    1. Dear Angie, thank you. Thank you for taking the time to read and connect so thoughtfully with me. The one thing that I love about working in Palliative Care is that everyone who is committed to this area and serving patients at the end of their life, has so much teach about their own experience and method – I learn from everyone!

      I love what you said “even though you may be engaged….those souls are tucked in the back of your brain”. So very true and the reason, good or bad, that being able to intentionally learn to “switch off” is so important.

      Also, I fully agree with what you said about being able to create beauty outside our work – that in itself is the cornerstone of longevity and making a wonderful contribution. Thank you Angie.

      Like

  10. Thank you for this article. I am not in the medical field but my aging and dementiaed mother in Law lives in our home. Me and my family are her primary caregivers for all daily functioning myself, husband and two teenage daughters). It truly is a group effort to care for her and make sure that everything is taken care of for her. Your article is a great reminder that we all need to continue to take time for ourselves and refill our cups daily so that we can continue to care for her. While we cannot really take off our work clothes I love this metaphor. I will share this with my husband and children so they do not feel any burden of care and can focus on the important things in their lives outside of the sadness that is seeing her grow older and weaker. Thank you for this insight into your work and care of patients!

    Like

    1. Hi Alicia, thank you for taking the time to read and write back to me. I love that my words have given you an understanding but also a perspective of how you can better care for your mother-in-law.

      Caring is such a beautiful act that your family can offer your mother-in-law but it can also take its toll on you if we are not careful to continue intentionally caring for ourselves. Because in-home caring is your “new normal”, setting intentions and putting on your “home jacket” will have to look a little different but I am sure will work.

      Thank you Alicia, I am so warmed that you would write and allow me into your world.

      Like

  11. Hey, Doc, beautiful words of wisdom. I particularly understand the way you feel about this. I helped my stepfather through long palliative care for Huntingtons Disease. I am now a prison chaplain. The men I meet feel hopeless, some despairing, some suicidal. Death is not the same but prison is a halting of normal life, and some of the effects can be similar to end of life. These guys have new life they can build at the end of a sentence, but they often do not have the social tools to do so. They are afraid to live again, or even con template it as an option. Self care for the professionals who encounter the raw emotions, who dig deep to find them and work with them, is of paramount importance.
    Thank you for writing such a personal article. I have shared it with two colleagues, who I think will find its message very profound.
    With every blessing,
    Krissy

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    1. Hi Krissy, thank you so much for taking the time to read the article and so thoughtfully comment, I really truly appreciate it.

      You are quite right, self-care is almost mandatory for frontline workers such as yourself to help soothe, ease, replenish, refill and restore what our patients/clients can unintentionally take away from us.

      I love that you took the time to write back to me because it shows that intentional self-care is not simply for medico’s like me but like you said “anyone who encounters raw emotions”. We are all flesh and blood but our soul and spirit can be crushed if we are not careful to guard our hearts and intentionally restore our bodies.

      Thank you again Krissy, I will continue to share personal articles because transparency cuts straight to the heart.

      Like

  12. This article is fantastic and so wise. Self care is essential for everyone. I have co-owned a performing arts school almost 20 years and have taught over 25 classes/week all 20 years. The schedule wouldn’t have been sustainable without the ability to care for myself and really LEAVE work. You articulate this brilliantly. Thank you! I will reach out to you for consult as i have often considered making a career change and something in palliative care has always interested me.

    Like

    1. Dear Robbie, thank you for taking the time to read the article and comment, I am so glad.

      Wow 25 classes for 20 years is huge! and yes self-care is for everyone. Do you know what? I am blown away by the response and that the self-care message that has cut to the heart of what is a commonly forgotten human need and intention, “to care for another, we much care for ourselves first”.

      Working in Palliative care is wonderfully rewarding and there is a place for anyone with a tender heart, the willingness to serve, the wisdom to listen first and most of all, the ability to leave it behind and live well outside of work.

      Thank you Robbie.

      Like

  13. DR. JONATHAN RAMACHENDERAN, I am just a member of the public and have read your blog! I take for granted people like you who provide comfort and assistance to dying people and never much thought of how this profession affects you. I now have a better understanding and appreciation from reading your post and I want to thank you for that and the great work that you and others do. My mother passed away in palliative care in 2009 and I saw some of the compassion you wrote about but thought well it is just part of the staff’s job to do this, but I realize it is like you said, you have to be a certain person to do this job! My 88 year old mother in law is at a point where she wants to die, even when she is not sick but losing her mind. The only joy she has is her great grandchildren when they are around, so we might be seeing palliative care again soon if she continues on this path. Thank you for your passion and service!

    Like

    1. Dear Ernie, thank you for reading the article and taking the time to write to me, I really appreciate it and can I reassure you that you are not “just” anyone, you are an advocate for what palliative care is and how it can help.

      You’ve absolutely nailed it with respect to joy and how this can impact a person’s suffering and bring meaning to their life and what they are experiencing.

      To be honest, I think working in palliative care finds you. Caring for those in the precious last hours, days, weeks and months of their lives is something that finds a place in your heart and connects to your innate ability to serve – whether it is being a volunteer, social worker, chaplain, nurse, cleaner or even doctor. But it is often afterwards that we find that we need to intentionally care for ourselves as we face difficult situations and suffering each day – well at least that was the case for me!

      Thank you for taking the time to write to me, I appreciate that as a member of the public, you recognise the great need for frontline workers to be physically/psychologically and spiritually healthy to make a difference.

      Thank you Ernie.

      Like

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