Over the past two years despite all the stressors faced there has been a sound heard increasingly throughout the corridors of the hospice. As many doors and windows have been left open to allow greater ventilation to allow viruses and other infective materials to be circulated out of the building but the sound of the wind is not the subject of this post. It has been cold at times during the winter and the sound of fan heaters has been present at times but again it is not interesting enough to merit any writing. When patients are breathless an electric fan is lent to them for them to have the breathlessness relieving air across the face which is more effective than oxygen and other prescribed treatments for people who can’t catch their breath. Our cleaning staff continue to work tirelessly to keep our premises clean, without their efforts we could not keep our operation running, and the importance of their infection control toil cannot be underestimated. The sound of vacuuming, wiping and mopping are commonly heard again and are not the subject of this piece.
The sound can be contagious. When you hear it you feel different. It is something that resonates inside you and it makes you feel more human and less alone. It can change your facial expression in an instant. It can lead to a sudden and rapid expulsion of air from your body. No, I am not talking about passing gas, that’s what anaesthetists do for a living, I work in palliative care. The brass band will not produce these sorts of sounds, but maybe the sound belongs in the orchestra’s wind section. Sometimes, playing an air guitar or the world’s tiniest violin can produce the sound.
My fitness tracker died on me a few months ago and since then the wear pattern on my shoes has slowed down. The reminders to do at least 250 steps each hour were a good reminder to stay active during the day. I have the luxury of working in a place with a garden surrounding it. A few times a day I can go out for a quick walk around the garden. One orbit is 500 steps, which would add to my daily step count. 10000 steps a day was more than achievable. The fitness tracker wasn’t mine, but one I had inherited from a family member, but I wore it out.
A few minutes of self-care interspersed within busy days. The simple act of walking in some nature. The sunlight on my face, the breezes through my hair. The sounds of the insects and birds doing their thing in the trees. The wind winds its way through many thousands of leaves. Not quite a forest to bathe in but in certain parts of the garden, you can stop under a tree and imagine that you are in much deeper woods. A momentary escape from the hustle and bustle of the workplace, I am briefly transported thousands of kilometres away. The fresh air is scented with the products of the plants themselves. It’s as if I am a time traveller, going back to the wellness retreat I attended three years ago, but I am not the same person anymore. Three years older and hopefully wiser.
I return to my office and the ward feeling refreshed. These micro-breaks throughout the day help to keep things calm.
I virtually attended a self-care workshop in Canberra today. I prioritise and practise self-care daily as outlined here. I still found it good to have a refresher on the importance of self-care for homo sapiens in general, but especially so for us palliative care practitioners.
The presenters pointed out the great resources available from Palliative Care Australia which have been produced by Palliverse’s own Dr Jason Mills. The downloadable PDF can help you design your self-care plan. I think all palliative care practitioners could have this as part of their personal development plans. The work we do is different, we come face to face with other people’s death and dying several times a day in clinical practice.
The session on self-compassion was another useful reminder to me, as I had completed a six-day self-compassion-focused wellness retreat three years ago. During this, I learnt to speak to myself as if I was speaking to a good friend who needed my considerate help. Our inner self-talk can be too harsh and over-critical. We are often too hard on ourselves and this can be self-destructive.
An Aotearoa/New Zealand approach to self-care would need to cover domains of the NZ Maori Health Model – Te Whare Tapa Wha. Wairua – Spiritual, Tinana – Physical, Hinengaro – Emotional, Whanau – Familial/Social. Training in Brazilian Jiu Jitsu (BJJ) has been an addition (some would say addiction) to my self-care practices and it helps me to cover all four health walls. Physical exertion has led to muscle gain and weight loss. BJJ has taught me to be more emotionally resilient and I feel I can handle more of everything. Regular exposure to the painful stimulus of joint locks and choke attempts has provided small doses of suffering. I can control myself in uncomfortable positions and it has helped with ego control. It is okay to tap out when you are beaten. I feel I have joined a family or community of practice and have befriended a culturally and age diverse bunch of people. In terms of spirituality, I feel more connected to my body as during BJJ training you have to be totally present in your body and attuned to what your opponent is doing. It can be a real escape from the daily grind of the rest of your life. If your mind wanders during a rolling session before you know it your joints might be in painful positions or your neck is being choked.
Yes, last week I did break my finger tip extensor tendon and have to wear a finger splint for 12 weeks. I returned to training this week and have been modifying my approach to protect the healing fingertip.
Last week was a heavy one in terms of clinical need. I was completing the latter half of a 12 day stretch and looking back at last week I realised I didn’t do enough self care. I missed my Brazilian Jiu Jitsu (BJJ) session last Monday as I was still feeling the effects of something dodgy I had eaten for lunch on Sunday. The instant weight loss was accompanied by instant energy loss from 36 hours of food poisoning.
My supervisor has been away for over a month and I am overdue for a professional supervision session, which I usually attend at least monthly. There are some months which are harder going in which I may need two sessions a month, and at times when it is especially severe even weekly sessions. The sessions allow me to reflect on my practice and how it affects me. I learn a lot from the sessions and have been attending regular sessions for the past 12 years. They have helped me become a better practitioner and are an important self-care practice.
Seasonal Affective Disorder isn’t usually a problem for me, but after the wettest Auckland July in many, many years I think I developed Rain Affected Despair. No it’s raining again, and again, and again. The down-pouring clouds have clouded my cognition. The constant humidity has led to this human feeling ‘mid’, as the young folks say. The real issue is I didn’t want my carefully styled hair to get wet after spending hours preparing it each morning. Also less opportunities for sunlight exposure.
I participated in many emotionally heavy conversations with patients and their family members last week. Many tears were shed. There were some tragic cases requiring my skills and some of them were challenging and pushed me to work at the top of my scope of practice. Professionally satisfying but the emotional labour was tiring.
I went without my usual Wednesday BJJ session due to a work commitment. I chose to attend a peer support network session as it only occurs once a quarter. It was good but took out another two hours from my day. I missed the physical aspect of BJJ but also the social aspect of catching up with club-mates.
By Friday, day 12, I was worse for wear and in need of a rest. The perfect storm had blown into my town and reminded me of my mere humanity. I have limits and am not a tireless robot. I will work on my self-care more this week, as I really need to.
It’s important to be able to switch off and take a rest. We are human beings and are not robots and though we need time to recharge our batteries. There is only so much time we can work before we need to take a break.
We cannot be on duty 24 hours a day as we need some time out from the grind. A job is a job, it can’t be your life, no matter how much you like or love your job. Are you in your job for the right reasons? Who are you doing your job for? Is it for the money or the prestige? For fame and glory?
What impact do you want to have on this world we all live in? What is your definition of success? What will it mean for you to have achieved your goals? What sort of difference do you want to make on other people?
On your days off try not to check your emails. Leave your calendar alone. They will still be there after your short break. They won’t be pining after you, and probably could do with some time away from you as well. There will always be work to fill up any spaces in your day. Nature abhors a vacuum and will find something to fill in your time.
As children we can’t stand being bored, every waking minute needs to be filled with 60 seconds of stimulation. As an adult I long to have a chance to be bored. Each minute is filled with 120 seconds of tasks to be done. There are too many interesting things to do. Too many distractions in life. Becoming bored will allow for some creativity to sneak back into your life.
Allow yourself some down time. Who knows what will pop up? You are not a robot, and even robots need maintenance time and care to run efficiently. Take it easy on yourself. Show yourself some self-care and self-compassion. You deserve it.
Some cases will hit you in the emotional gut harder. Maybe the situation triggers something inside you, or the patient or their family members remind you of someone that you know. These are the sort of feelings that can be reflected upon during professional supervision sessions. Something has impacted you emotionally and you may not know what it was or why it had such an effect on you. The supervisor can help you to tease this out. It’s like they hold up a mirror that allows you to reflect on your emotional responses to the patient encounter.
The risk of connecting with another human is that as a human being you can feel hurt by the relationship. You need to make a connection to work with someone closely, but the connection puts you at risk of emotional harm. Strict boundaries may help delineate where you stand with each other. Some people you will identify with more and will feel closer to. Professional supervision sessions usually occur monthly and in the times in between, you need other self-care resources.
Debriefing with your team members can be a useful exercise and can lead to team building. Acknowledging the human feelings we all have felt dealing with the case. Some cases are tragic and sadness to some extent is unavoidable. Express the grief, and get over the loss, with your teammates. If you internalise the feelings too much they may make you feel unwell and you will be a less effective clinician. Informal debriefing with colleagues can be a good thing to do. Some cases will require a more formally structured and facilitated debriefing session.
If you are feeling upset about a patient encounter, your team members will likely be feeling similar. Talking through difficult cases with each other can be helpful. Don’t bottle up the emotions. Don’t take them home with you after work. Working in palliative care we do deal with lots of sad stuff, and it can get to you if you do not proactively take care of yourself and your teams. Self-care is an essential practice and is a crucial component of any clinician’s sustainable practice. Please look after yourselves and your teams.
In Palliative Care practice I often have emotionally loaded conversations. Tough talks about death and dying are commonplace. Emotions may flow in a raw state and tears may be involved. Sometimes you are confirming people’s greatest fears. They will not be recovering, they will become more unwell, and they will die. The emotional hit can be hard and the energy is felt by the recipient as well as the provider of the information.
Human emotions can be messy and the levels of distress can be high. When in the clinical moment I have to hold it all together, to stay calm as I guide them through the rough waters. I allow the emotions to flow, to be felt as they cannot be denied. Preparing someone for their imminent death can be some of the toughest work I do and some of the most important work I do. I don’t want anyone to have any surprises, they need to know what they are dealing with. The information will be shared in a kind and gentle fashion, but some ideas and concepts hurt when they are heard. The treatment of someone’s existential distress is beyond the effects of any of the medications I prescribe.
After conversations with high emotional stakes, I will call for a break. I will remove myself and my team from the patient room and will leave the inpatient unit itself. We walk upstairs and have a drink in the staff room. We remove ourselves from the fray, even if it is for five minutes. A micro-break is had. Our bodies and minds are taken away from the physical environment where heightened emotions were experienced. We nourish our bodies with some food and drink and take some time out. If possible, we also go out onto the deck to have some fresh air and sunshine.
Soon enough we will be back downstairs to deal with the next case. The short break allows us to be present for the next conversation with our next patient.
One of the impacts of COVID I have noticed in the past two years is the increase in late diagnoses and subsequent late referrals to palliative care. Access to medical care shifted towards virtual means around the world and people may have put off visits to the doctor as for a while it was not easy to be seen in person.
There have been many late and in some cases too late referrals to palliative care. This creates a scramble situation as our services try to respond to the urgent need. Often in the last two years, we have received patients transferred for end-of-life care who may only have been diagnosed mere weeks before death.
We do the best we can to help them but it can feel rushed. A connection needs to be made to help the patient and their family. Rapport needs to be built and in an ideal world, we would like to have more time to build a therapeutic relationship before the patient becomes too unwell to engage with us fully. We don’t always have this luxury and have to make the connection faster. This is not a smooth process, the stakes are higher, emotions are rawer, and stress levels increased.
A short therapeutic relationship also means disconnection needs to occur in a faster manner as well. We are involved in some cases only for short days or hours in some cases. The ability to connect and disconnect without losing your humanity is an art to be developed. Strong boundary perception is important otherwise we couldn’t continue doing this job day in and day out. A delicate balance is required between connection and disconnection. Attachment and detachment. Involvement but not enmeshment. Empathy and compassion without entanglement. Human commonality and professionalism. We try our best to do enough.
I started writing this post two years ago, and I tried to complete it this time last year but I wasn’t able to. I have finally completed it today, and it serves as a sneak preview chapter for my upcoming book Bedside Lessons which will be available for purchase on Amazon Kindle on 09 June 2022.
Death Jumps The Fence – I miss my mum
Every Friday I usually wear a fish neck-tie and chips socks, this is in honour of my parents who ran their fish and chip shop for 35 years. Friday was always the busiest day thanks to ancient papal decree. Mum loved to work in the shop and chatted to generations of families who were regular customers. Mum’s eyesight was destroyed by an autoimmune condition called Uveitis. This stopped her from driving her car that she had owned since it was brand new. A red 1982 Toyota Corona – Popularity has decreased since 2020. Not being able to drive limited Mum’s independence. Her partial blindness in one eye, and near total blindness in the other didn’t stop her working. Somehow she would still cross one of my hometown Napier’s busiest street to walk to the shop. She loved serving her customers and always had a friendly smile for them. Apart from rheumatoid arthritis and a blood disorder, Mum’s health was good until her final illness.
It all started early one morning, when severe back pain woke Mum up. She was rushed to hospital and couldn’t move her left leg. The initial differential diagnosis was of a stroke but the head scan did not reveal any brain issues. Further tests discovered a blood clot which had blocked the spinal artery which supplied the area of spinal cord controlling the left leg. Mum had been troubled by a blood disorder for the previous five years. This led to her blood being thicker than usual, which may have caused the clot formation. Blood thinning medication was started. Other tests discovered a suspicious mass lesion in her chest. A biopsy was requested.
Whilst awaiting the biopsy Mum was reviewed by a lung doctor who bluntly told her that she had cancer, and that she would need to have intensive treatments. These would need to be done at the regional cancer therapy centre, two hours drive away. This sent my Mum, who was always a bit anxious, into a tailspin. She stopped eating, couldn’t sleep, and was inconsolable. Mum had a good memory throughout her life, but in the months prior to this illness she had started having short term memory loss. Looking back at this her illness had likely taken its toll on her memory. Two days after the bluntly delivered unconfirmed diagnosis Mum had forgotten what had been said, and was able to continue her recuperation. She knew that a biopsy had been arranged but could not remember what for. The prospect of it terrified her.
I flew back to Napier on a Friday morning to help Mum get through her biopsy. She was scared and needed her hand held. The radiology team who were performing the biopsy ushered me in the room, and I gently told Mum to take deep breaths. I explained to her in Mandarin Chinese, “There will be some pain from an injection. Then your skin will go numb. They’re about to put in another needle. It shouldn’t hurt, let me know if it does. There will be some pressure but it shouldn’t hurt.”