I think therefore I am? – How Much Is Enough?

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How much is enough? This is a question not asked often enough of ourselves.

Many of my patients had been saving their fun times, their big and only overseas trip until their retirement. I’ve witnessed many tragedies as people retired and become unwell. The opportunity to enjoy their hard-earned reward stolen from them by illness. Falling unwell soon after retirement. Going from the working life to the dying life within a matter of months.

Balance must be sought and acted upon. That’s what my Aunty Helen always tried to teach me. It is good to scrimp and save but enjoy yourself along the way, as you may never get the chance to. I’ve seen it in the stories of the patients I look after. They saved up all their enjoyment until the end but were too unwell to enjoy anything.

Working in palliative care you’d think we’d learn the lesson – life is too short. Seeing this stark reality daily through others’ experiences could act as a stimulant to action. Often it doesn’t, we practitioners are just as human, just as blind as everyone else. It won’t happen to me. I’ll be one of the lucky ones. But it could. Happen to anyone.

Are you still working towards your goals and values? Are you being true to yourself and your life mission?

How much is enough?

It depends on who you ask, everyone will have answers which match their bespoke lives.

How much money is enough?

How many investments owned is enough?

How many degrees studied is enough?

How many books written is enough?

How much time is enough?

Never enough time.

Palace of Care – A Change of Plans

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We knew he would die soon and we asked him if he wanted us to contact anyone. He told us he would like his son to know, but he didn’t have his phone number. By this time he was too unwell and needed help with communication via social media. Our nurses helped him to send a message via his accounts. He died before he received any replies.

As per his wishes, we had arranged for a funeral director to uplift his body as he had wanted a simple cremation. He had limited savings and arrangements had been made with social welfare for a funeral grant to pay for his cremation. Our nurses again checked his social media accounts and found a reply from his son, including a phone number. A phone call was made overseas and was answered by the young man’s foster mother. She was told of our patient’s death, and said that his son wanted to come over to see him, and would arrive in town in three days’ time.

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I think therefore I am? – A Sense of Urgency

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The one thing I want my students to learn about palliative care patients is they need to be treated with a sense of urgency. Life-limiting illness is time-limiting illness. Therefore patients’ time must be treated with respect, as it is precious and beyond price.

If someone only has six weeks left to live and you make them spend six hours waiting in a clinical setting, you are robbing them of valuable time. Time they could spend doing important things. Having important conversations, meeting people possibly for the last chance to say goodbye. Bringing closure to long-term relationships. Time spent with friends and family. Time they could choose to do, whatever they want to.

Please do not waste their time, as they can never have it back again. No matter how much money someone has they can never buy back time. Please treat dying people’s time with respect. It is their time, not your time. Please treat palliative care patients with a sense of urgency. Time is running out for them.

I think therefore I am? – Debriefs in brief

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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.

Palace of Care – Micro-breaks

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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.

I think therefore I am? – Dis/Connect

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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 think therefore I am? – Not Feeling Myself

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How would it feel to be unwell all of the time? Not something I had considered even though I care for unwell people all of the time. I felt that I was in good health until my recent bout of COVID. I am not used to feeling unwell and I have not liked it. Recovering from COVID I have felt exhausted and it has made a small voice inside me ask if I will recover or not? Will I feel better again? Can I go back to how I was before? Can I still do as much as I used to? Will I ever feel like myself again? My intellect knows I will recover soon. My emotions have not been so sure.

What would it feel like to have an incurable illness? To suffer from a condition that will not go away. Something you will be stuck with for the rest of your life. You will feel more and more unwell as time continues to flow on. How would it feel to be in such a situation? It will not go away, it will be something that becomes part of your life for the rest of your life. There is no escape from this situation for you. This is how you will be for the rest of your life.

No fix is possible, no change in the situation you are in. You are stuck in the prison of your own body. Things will never be the same again. You may not be able to do whatever you did in the past. How will this be for your mind? How can you handle this emotionally? What can you do to cope with this? How can you continue with your life? Nothing will ever be the same again. How can we do this? To be in such a vulnerable position will be a true test of resilience. A shock to the system. Let’s see what happens.

I think therefore I am? – Cheese, Quackers and Other Oily Things

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I’ve looked after thousands of patients over my 14 years of working full-time in Palliative Care settings. The patients that I see have tried all the standard treatments and their illnesses have not been controlled. Out of desperation, some may search for complementary (hardly ever complimentary) and alternative treatments. My standard policy is if something helps them to feel better then who am I to judge what is right for them? I support patient choice, even if people do not follow my recommendations or advice. But if a treatment causes them harm, then I may have to intervene.

I have often been asked by patients and their families whether or not alternative/complementary therapies are any good. Mostly, I don’t know enough about them, but from my training, the evidence does not support their efficacy. It’s not my job to extinguish all hope in their situations, and no one would be happier than me if miracles did occur. The harsh reality I have witnessed from caring for thousands of patients is that out of the hundreds who have sought non-mainstream treatments, very few are still alive.

If it sounds too good to be true, it probably is.

Oil from snakes makes many palms greasy.

The cure-all panacea that has been hidden from you by the Illuminati and other conspiracies makes for a good story, but the patient thought they were buying non-fiction.

The false hope market is bullish and continues to make strong returns for a few people.

If it looks like a duck, sounds like a duck, smells like a duck. It probably is a duck.

Sneak Preview from Bedside Lessons – Chapter 54 – Always in Between

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I have lived in-between for most of my life. I grew up between two cultures; the Chinese at home and the Eurocentric outside of my home. Later in University, I was part of the local Chinese Group but felt more comfortable as part of the newer Asian immigrant group.
I have a lot of experience in bridging between two different cultures which are different in many ways and may think they have little in common. Palliative Care lies in between the usual medical culture of active treatment and the culture of death and dying. Was that what attracted me to Palliative Care? Are we there to bridge the gap between cultures?

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Palace of Care – The Band Plays On

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My little coronavirus rock band continue their tour of my body. They wrapped up their sold-out concert in my throat and the music was so loud my ears are still stinging. Today’s destination was my lumbar spine and they played their achy breaky music with gusto. No matter how often I stretched throughout the day the music of the band drowned out all other signals.

I have to be honest I am sick of all the merchandise the band brings along to each venue they play at. The congested stands of my nasal sinuses couldn’t stand the pressure any longer. The burning man set up in my throat yesterday is still smouldering and ready to reignite at a moment’s notice. The worn-out muscle fibres evidence that this band of players have worn out their welcome.

The uncertainty of each day of illness. Will I feel better when I wake up again? Will I be in less pain than yesterday? These are questions I am considering each day and are they similar to what my patients must ask themselves? I’ve only been unwell for a few days but my compassion for those who suffer from chronic illnesses is growing.

Maybe tomorrow the band will head down to my feet and then it will be my pleasure to kick them out of my body. There will be no request for an encore.