Category Archives: Ethics

Palace of Care – Connections

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This afternoon I lectured on Resilient Leadership at a university executive MBA course. I spoke for 50 minutes on the leadership journey I had been on over the past nine years since becoming Medical Director. I talked about the ups and downs I have had to work through and the importance of leadership and resilience. I shared several stories as real-life examples of doing the right thing. Not the easy thing, but the right thing can be very hard at times. Declaring that you are patient-centred cannot just be a fashionable but tokenistic slogan, you have to mean it. You have to prove that you support patients’ right to choose, not just in terms of assisted dying, but other treatments and procedures, which may be invasive or have burdensome side effects. Patients and their families may need our advocacy, and support with decision making.

I allowed for 10 minutes of question time at the end and some thoughtful questions were asked. As I was wrapping up the hour-long session one of the audience members waved and caught my attention. I thought he wanted to ask a question. He didn’t have a question but instead wanted to thank our hospice for providing end-of-life care for his late brother. He said that his mother was especially grateful for the care received. A humbling moment and a reminder that the world can be a small place in which a lot of people are connected in various, often unexpected, ways.

So ends Work Day 20. I think I’ll take the day off tomorrow.

Palace of Care – Shared Decision Making

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With advances in medical technology and treatments, there may be a lot of management options available. Whether any treatment is the right thing to do for the individual patient in front of you needs to be carefully considered. It may be easier to do something, rather than explaining why not doing something is the better option. It is best if a person can take part in the decision making but they don’t always have the opportunity as they may be too unwell.

He’d had many procedures and treatments over the past months. Some had been beneficial, others not so much, all of them painful. He was becoming better at saying, “No.” If it would improve his quality of life he might consider it, but if not he couldn’t see the point. He was already in a lot of pain. He couldn’t keep down his food let alone any medications. They didn’t work anyway. Maybe he had been too subtle with the doctors. They all seemed willing to help and had consulted other colleagues in the hospital to access further investigations. He wasn’t sure if he wanted them. There had been so many this year, and each of the results had indicated that everything was getting worse. He didn’t need it to be confirmed in a written report, he felt it in his bones, the deep fatigue that gnawed at him. Reducing him more each day.

Maybe tomorrow he would tell them how he truly felt. If he could get a word in…

I think therefore I am? – Who does health information belong to?

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Photo by Wesley Tingey on Unsplash

This was a question that came to mind after a past colleague theorised about changing a patient’s prognosis to more than six months left to live to stop them from accessing the assisted dying service. I was shocked that they would consider doing something like that. In plain English, it would be telling a lie. Lying to a patient and not giving them your true medical opinion. An opinion that required at least 13 years of training to develop, but one they could consider defiling by not telling the truth. To me, this was wrong on many levels and was one of the main reasons I didn’t miss the ex-colleague much.

Honesty is something our patients deserve. We need to let them know what is going on to the best of our abilities. We are not fortune-tellers and we cannot predict the future but we can provide our best educated guess. People usually want to know how much time they have left as it puts a lot of things into perspective. It makes them focus on what is really important to them. Who is important to them, and who they want to spend their precious time with. What things do they still need to complete given the limited time left? Where they draw the line. What is too much for them to handle? To rob them of these opportunities is wrong.

A person’s prognosis is not owned by the doctor, it is the patient’s prognosis, not their family’s, or their parents’ or children’s. It is their own prognosis. They can do what they like with the information. It is their property and can be used as they see fit. To deny someone the truth about their end of life is such a bad thing to do. You might not agree with what a patient, or what another person chooses, but that does not give you the right to sabotage their plans. They have already lost so much control of their life and a so-called professional would try to stop them from attaining a dying wish.

We are supposed to provide patient-centred care, not doctor-centred care. We exist to serve our patients. They do not exist just to provide us with work, they have lives of their own, stories of their own. It is not about us. Palliative care is supposed to be focused on the needs of the patients and not the needs of the providers. Anything else is just wacko.

I think therefore I am? – Right and Wrong

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It is important for me to do the right thing for my patients. In order to do this I need to know them well enough to know what the right thing for them is. I have my own ideas but they might be completely wrong or completely against what they think is right for them. I have to be careful not to fall into the trap of thinking that I know better than the person themselves. They are the expert when it comes to themselves not me. They are the owners of their own lives and have been making decisions for themselves for the whole of their lives. They were not born yesterday, but in the case of palliative care patients, they might die tomorrow.

I look after patients but that does not mean I own them. They own themselves. Prior to meeting me they were fully grown adults, living their own lives, making their own choices, choosing their own destinies. My job is not to tell people what to do. My job is to find out what people need and to try to help them with it. If my set of professional and personal skills can help them meet their need then I can help them. If I don’t possess the skills they need from me then I will refer on to someone who does have those skills. It’s not about me, it’s about them.

It is disrespectful to treat people as if they are children when they are fully grown adults. I worry about some people who work in palliative care doing that, treating people as if they were babies. Incapable of making their own decisions, needing us to make decisions for them. This is the wrong thing. Taking on the role of a parent, but we are not our patient’s parents. How would we feel if we were treated like that? Disempowered, disrespected, dismissed?

Palace of Care – Three of a Kind

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A severe deterioration had been expected within days of their arrival. A review of their medical records pointed towards a poor prognosis. There didn’t seem to be much time left. We tried our best to prepare the patients and their families for imminent death. A few days passed and none of them died. Maybe it was good control of their symptoms. It could’ve been the less stressful environment of the hospice inpatient unit. Was it access to fresh air? The better food? Flexible visiting hours and the ability for family members to stay overnight in relative comfort. Something kept them alive. None of them wanted to die. They all had too much to live for.

Different origin stories. Different walks of life. Different family relationships. Different husbands. Same hospice. Same time. Same staff looking after them.

Deteriorations happened and somehow they recovered. Again and again, they kept beating the odds. Staying alive in a mostly comfortable state. Their loved ones were along for the roller-coaster ride with seatbelts off.

Worsening symptoms required changes to medications. Their worsening overall condition led to discomfort and uncertainty. Was this the start of the final deterioration? Had their bodies decided which path to take? Which destination to go for? How much time was left?

We didn’t know the answers to the questions posed. We had no way of predicting what would happen. Instead, we would monitor their progress over time. Give them time to declare themselves. We would continue caring for them no matter what happened.

Palace of Care – Staying Alive

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Doctor yesterday afternoon when my brother arrived Dad woke up. They were able to talk to each other overnight.

Wow. I was not expecting him to wake up again. I was very worried about him yesterday.

Yes, we were too. We’re happy that he has come back to us again.

That’s good. He was troubled by pain again overnight. I need to increase his pain relief again.

We’ve been keeping his mouth moist, and he has swallowed some coconut water. Is that okay?

That’s okay but make sure that he is fully alert, otherwise, he may choke.

Okay, see this is how we have been giving him the fluid.

Hmm, he is swallowing okay. You can keep going.

Good, we were worried that he was starving. We want to give him more fluids. Could we give him an IV line and glucose?

It’s best to give him fluids by mouth, any IV infusions would still be too much for his body to handle.

They’ll cause uncomfortable swelling?

Yes, that’s right, and it might make his breathing worse. Is there anything else you need?

Could you write a letter to support our relatives coming over?

Yes, I will write the letter after I prescribe the medications.

Thanks doctor.

You’re welcome. Let’s take things one day at a time. Please let us know if you need anything.

I think therefore I am? – The Final Lap

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In the approach to the finish line, there is an acceleration. Bad things start happening faster and faster. One physiological insult after another. The body just can’t keep up with the relentless series of assaults. Nature is trying to take someone out. Symptoms that are already present worsen. New symptoms develop and cause more suffering. There is only so much a person can take, no matter how strong a fighter they are. The mind and spirit may still be strong, but the flesh has become weak.

The family urge them to hang on. They are trying their best but there is little to hold on with. They are slipping away from our world. They are dying and there is nothing humans can do to stop it from happening. It is up to higher powers now, it is out of our hands. We can make people more comfortable but we can’t save every life. There’s just too much going on, too much going wrong.

I’m worried that time has become really short. There might only be hours to short days left to live. I’m worried they are suffering, that they are really struggling. We want to make them as comfortable as possible. Medication changes could make them more comfortable. The main side effect is sleepiness. At this stage of things, even if we took away all of the medications they would still be sleepy but would be very distressed. If they are distressed this will make you all distressed.

I’m sorry this is happening. I need you to know what is happening and what is going to happen. I can’t let there be any surprises between us. Yes, please talk amongst yourselves. I’m happy to come back later to discuss this further. I just want you to know that we are looking out for their best interests and that their comfort is our top priority. We’re going to get them through this, we’re going to get you all through this. Please let us know if you need anything.

I think therefore I am? – Sales Pitch

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Different healthcare cultures lead to different healthcare and expectations. If you have the money you can buy almost any treatment it depends on what people are willing to sell, and the cost that is being charged. There is a large market that caters to desperation. Nothing else has worked, come and see us, and we will keep you alive. If it doesn’t work it isn’t our fault, you probably didn’t follow the strict protocol correctly. You didn’t try hard enough. Sorry our treatments is so good but we can’t offer a money back guarantee. It’s so good that you won’t need your money back. It also cures…whatever else you have. No what I’m selling is not too good to be true, it is truly good. Those other doctors haven’t had as much training as I have. They were just trained in traditional Western or Eastern medicine. I am an advanced practitioner and I will be able to help you. Join our subscription model and start saving your life now. Just one easy monthly payment via direct debit. Don’t worry about the billing we will just collect the money ourselves as customer satisfaction is our top priority. It’s a real bargain my cold-pressed extra-virgin snake oil…

Drink this potion, apply this lotion, move your body in this motion.

Use this poultice, made without artifice, I have 40 years of practice.

It looks bigger on the scan, that’s just a scam, your disease our treatment will slam.

What else can we do, what do you mean you can’t poo, none of our happy patients would ever sue.

Why would you want a treatment pause, didn’t you read the last clause, it’s all ours now what was yours.

You did it all wrong, you didn’t follow along, our medication is strong.

The price has to increase, the supply of this rare element is about to cease, yes we extract it from fleas.

You can’t get out of bed, that’s all in your head, why don’t you try harder instead.

We will now have to intercede, our service you will always need, otherwise your cancer will grow at speed.

Sorry we can’t answer right now, our attention we cannot allow, we are too busy saving lives to take a bow.

It worked for everyone else, it even cleared up that guy’s welts, it’s your attitude that smells.

What you’ve run out of funds, you can’t afford the frankfurters just the buns, well sorry we have to runs.

I think therefore I am? – Colours

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Most people have a favourite. Something caught your eye when you were a kid. It might be the colour of your favourite toy. Or your favourite food. It might be the colours of your nation’s flag. Colours are abundant in our world, the different shades make the world more interesting.

People are of different skin colours too. Some of us are white. Some of us are Brown. Black. Yellow, Olive-skinned. Grey. Different but the same in many aspects. Various empires sent their colonists out into the bigger world. The locals were impacted and the trauma that was experienced can be passed down through the generations. A deep lack of trust was ingrained by the actions of colonists toward the natives. This distrust can be passed down the bloodline, leading to intergenerational trauma.

When you are in good health you can tolerate a lot more than when you are unwell. Your baseline fears and needs come to the surface under stress. The uncertainty of their situation can leave a person terrified. The fears from the past can come back, no matter how strong a person had been in suppressing them.

Past traumas can be triggered unintentionally and people may want to avoid situations when they feel at their most vulnerable. People try to remain as independent as possible, and they may struggle in their non-acceptance of help. When you are weak and tired you may try to show your strength by pushing people away. Not being able to toilet or shower oneself may be one such situation. Requiring assistance means the loss of privacy and dignity. Having to be naked in the presence of others is a huge line to cross. Having to admit, “I need help. I am vulnerable.” A nightmare situation for anyone, having to be fully exposed. Add to that the inter-generational fear triggered by someone who resembles your ancestors’ oppressors and pre-existing suffering can be amplified.

Colours can affect us in many ways. Red light means Stop. Green for Go. What does amber/orange mean? Speed up or slow down? Everything becomes a blur of colour. The centre cannot hold, as a human being accelerates towards the finish line. The colour in their eyes faded down to a sparkless stare into space. The light of the person dims as they prepare to leave this plane of existence. Off they go to parts unknown, never to return again.

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.