Palace of Care – Straight Up Now Tell Me

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Things hadn’t been going so well in recent weeks. Our patient had needed to come in for treatment which helped one of their issues, but came at a great cost. Pain was made much worse for most of the day after the treatment was given. This was on top of a high background level of pain already. I suspected our patient downplayed their pain. They were well versed in putting up with significant amounts of pain. There was no questioning their toughness and strong determination.

I said to them, “anyone else would not have been able to handle what you had in the past year. Most people would’ve stopped treatments after the first two cycles, but you had more than ten cycles. I think you have stayed alive through sheer will power alone.”

We had come to the point where, “First Do No Harm,” had to be considered. The treatment we had provided had made the symptoms worse, it had increased the suffering experienced. The entire management plan needed to be reassessed, with the patient and their spouse. A meeting was scheduled for the next day.

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I think therefore I am? – No Sale

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Despite my best efforts sometimes people just aren’t interested in what I have to sell. I am trying to work in the best interests of the patient. I want to make them as comfortable as possible. If there is pain I want to alleviate it as much as possible. If there is breathlessness I want to do something about it. Untreated distress in a patient will lead to distress in their family members. Similar to the care philosophy in Paediatrics, in Palliative Care practice you need to consider the patient, and their loved ones as the unit of care.

The duty of care is to the patient above all but consideration for their loved ones is essential. They will be the ones who will survive this episode of care. Reduction of their distress needs to be considered secondary to reduction of patient distress. Most of the time we will all be on the same page. The patient wants their distressing symptom relieved, as do their loved ones, as do the clinicians. Everyone is in agreement and things are relatively simple.

This is not always the case though. At times I identify suffering in a patient and I will recommend a course of treatment. All treatments will have side effects, with a lot of the medications we use sleepiness is a common side effect. The patient may not want to feel sleepy and will try to put up with the distressing symptom themselves. Or their family will want them to be as alert as possible, which may come at the cost of comfort.

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Palace of Care – You Are All On My Side

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The hospital palliative care nurse called me to refer a lady in her late 80s who prior to admission had lived independently until she started falling over. It was minor slips with minor injuries, then moderate trips with moderate injuries. In the past week she had a major fall, resulting in life-threatening injuries. Hospital tests showed that her chemical balances were all out, that a lot of bones and organ tissue had been replaced by cancer. The reason that she had lost her physical balance was that the cancer had invaded her spine, crushing the spinal cord and rendering her lower body weaker and then paralysed. She could no longer move her legs, but unfortunately could feel pain, and in fact her legs had become hypersensitive to pain. The bundle of nerves that make up the spinal cord do not like being pushed on, and scream out in protest.

During her week in hospital she had almost died twice. Each time, somehow she had recovered. Each time she was left devastated that she had recovered. From being fully independent, she had become fully dependent, a situation that she found impossible to tolerate. She had some stern conversations with The Almighty, she was not happy with what he had chosen for her. Her beloved husband had died over 30 years ago and there wasn’t a day that she didn’t think about him. She wished to be at his side again.

She asked the nice hospital palliative care nurse about the assisted dying service that she had heard about. Printed information was provided which was read and digested, with some difficulty as the pain in her legs and bottom still bothered her despite the pain relief she was given. She thought that she would qualify for assisted dying, having met all of the eligibility criteria and still maintaining her decision making capacity. The palliative care nurse said that no-one in the hospital provided the service, but that a referral could be made to the Ministry of Health in order for them to assign a practitioner to her. A process that would usually take two to six weeks to complete. Her ward team made the referral to the national service.

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I think therefore I am? – We told you so

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Too young to be dying , only 32, with two toddlers 3 and 1 years old, she hadn’t even been a smoker. She had only had back pain, and on investigation last year, they found that she had metastatic lung cancer.

She came in with terrible pain, hadn’t been able to sleep for most of the week. Her partner, the father of the children, looked just as exhausted. Looking after her and the two tiny children. A tragic situation.

Pain difficult to control, breathing in a distressed fashion. She could barely leave her bed in the last two days.

Usual rule of thumb applied, if changing over months, months left to live, weeks – weeks, days-days, hours-hours.

Over the past four days, a change noted each single day. We estimated that she only had days to short weeks left to live.

We knew that she was supposed to go to Oncology, to have chemotherapy, but we thought she was too unwell.

We rang the Oncologist to discuss this, that we thought that she was dying, with only days to weeks left to live. We recommended that she not have chemotherapy, as we were concerned it would cause her more harm, than any potential benefit.

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I think therefore I am? – Hearts and Minds

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To do palliative care and hospice well your heart does need to be in it. People can easily tell if you are not really there. It doesn’t have to be as obvious as someone who won’t sit down, or who constantly checks the time on their watch. Do you have somewhere more important to be at the moment, than in my room? Something more important that needs to be done than listening to me?

If someone’s heart isn’t really in it people can tell right away. The lack of attention that is paid to simple things. So we do want people to be engaged to actually care for people. It does need to be done professionally, with kindness and respect. People need to have firm boundaries that they do not cross. It’s about protecting yourself and also the person that you are working with. You can be friendly but cannot be their friend. You can be caring but it must be in a professional manner. We are guests in their lives, and we do not want to disrupt pre-existing relationships.

We are involved possibly in the final chapter of someone’s book of life. It is not about us, but about them. They are the stars of their own show, of their own movie, of their own stories. We are only extras, or play a tiny bit part. We may have only a few lines to say, and we will try to say them well. The direction of the story needs to be guided by the person going through it all. We would not be in the same room as them if they were not sick, if they did not need the care that we can provide. We must never forget that, that they are not here because of us, but that we are all here because of them. The patient needs to be at the centre of everything that we do, not their family members or friends but the actual person themselves.

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Palace of Care – Flirting at the end of life

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Good morning we’re two of the hospice doctors, the pharmacist and of course you know your nurse.

I can tell that you are very clever people.

You are a very charming lady to be able to tell that, as your eyes are closed and you can’t hear us apart from when we shout in your ear.

My hearing aid is broken, I close my eyes so that I can listen more intently.

That’s what I’m doing too.

I felt more comfortable and at peace as soon as I arrived in this room. So I’m not sure if I have any pain or discomfort.

The male doctor looked puzzled as the patient moved her hands, grabbing onto his shoulders.

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Bedside Lessons – 14. Stuck in a moment

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By the time of his admission he’d been on the steroids for six months, to counter swelling caused by brain metastases. His wife had stopped nursing at the GP practice in order to care for him.

He had been deteriorating in recent weeks and could no longer be reasoned with.

We couldn’t talk to him, he just stared at us blankly when we asked him questions, his wife had to answer for him.

She described him sitting on the bed eating mandarins spitting the seeds out onto the carpet.
She said that he would be horrified if he knew what he had been doing, as he was the tidiest person she knew and he had always been house proud.

The worst thing that had happened was after he had urinated on the bedroom floor having mistaken it for the toilet. He then slipped on his own urine and fell to the floor, luckily he did not hurt himself badly.

I asked if he had any seizures. She said that at times she had seen his arm going rigid, and then he seemed to be even less responsive. She had thought of seizures, but there was no jerking. She had mentioned it to the Oncologists but they had not looked into it any further.

I was intrigued by this. Could it be non-convulsive status epilepticus – repeated ongoing seizures without convulsions leading to decreased consciousness? His wife agreed to a trial of anti-seizure medication. If the medication didn’t make any difference we would stop it.

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Palace of Care – It ain’t easy being green

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She had been told that she would die soon, twice before, but she continued to outlive her prognosis. Stress levels were high, as this time she felt more unwell. Pain was worse and even her lifesaver wasn’t covering her symptoms.

She had complete faith in it, and often credited it as having saved her life. Before she had discovered it she had tried many legal medications but none of them had worked, or had produced intolerable side effects. She had never liked going to the doctor and preferred to have plant-based treatments from her naturopath. The green stuff had calmed her down, with minimal side effects. It had allowed her to go back to work, and she was able to be a mother again.

Being diagnosed with metastatic cancer had really been challenging, but extra doses of the natural product had helped to keep things calm. In recent weeks she had been admitted to hospital twice and was told that she was about to die twice of something called DIC (Disseminated Intravascular Coagulation.) The doctors had explained this as her clotting system going crazy, causing blood clots in her blood vessels, which were painful as blood supply was cut off to affected areas. A dangerous situation as clotting factors ran out, it meant that she was at great risk of bleeding. Caused by her cancer, and with no cure, hence she had been written off by her doctors twice before, and now it was third time lucky.

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Palace of Care – The Show Must Not Go On

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Hey, welcome to our hospice.

I know that you put on the show for your friends and social media, but you don’t need to do that with us. You don’t have to be all right when you are feeling anything but.

We need to see the real you in order to be able to really help you.

We know how strong and tough you are.

Please don’t use up your precious energy telling us what you think we want to hear.

I will be honest with you but I want you to ask for help when you need it.

We will always use as little medication as we can, but we do not want you to put up with discomfort, we don’t want you to struggle.

We are really keen to help you, if you’ll let us.

Can you do that?

What would make this place feel less like a hospital for you?

Please bring in your own stuff to decorate the walls.

You have made brave decisions recently to stop treatment, which I fully support.

I’d be happy to explain things to your partner when they come in.

Listen to your body, don’t push yourself. Rest when you need to, think of it as a recharge. Ask for help when you need to.

Save your energy for nicer things, more important activities, like spending time with your partner.

If there is anything you disagree with, please let us know.

We’d like to give you back some control of your situation, completing the advance care plan will help.

We are on your side and will be guided by what you want, or don’t want.

Thanks for giving us a go.

Bedside Lessons – 10. Freedom to Choose

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Working in the community palliative care team I don’t meet in person most of the patients that are under our team’s care. I often have to provide advice for people that I have never met and have to count on my staff members’ assessments as the basis of knowledge of each patient. This is how our specialist support is provided from a distance, this allows me to have about 380 patients under my consultant remote control supervision at any time. Often I will provide advice which will be conveyed to the patient and their family doctor to be actioned.

This is the story of someone I never actually met but whom I provided advice on, an elderly Jewish lady who was a Holocaust survivor. I never found out which concentration camp she had lived through but somehow she had stayed alive when many had not. When she was young all control of her life had been taken away from her. Separated from her family whom she never saw again, made to endure hellish conditions, tattooed and emotionally scarred for life, she some how made it through her ordeal. She moved to New Zealand, married a local man, had children and grand-children and a rich and rewarding family life.

Recently her health had taken a turn for the worse and she was diagnosed with metastatic cancer with spread to her brain, causing headaches, and seizures. Despite having had radiotherapy treatment and high dose corticosteroid treatment her symptoms worsened. She was still clear in her thinking but was at risk of this deteriorating soon.

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