Tag Archives: patient autonomy

Palace of Care – Right to Choose

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Empathy – to try to imagine what another person feels like, to put yourself in their shoes, and to try to see things from their point of view.

Compassion – To identify another person’s suffering and to want to do something about it.

Autonomy – The right to make your own choices for yourself.

After years of training and more years of clinical practice, I try my best to practise medicine in a compassionate manner. I try to find out who they are, what drives them as a person, how I can help them in the way they want to be helped.

I try to do my best to inform them of their options, of what I think lies ahead for them. I try my best to take as much stress out of their individual and familial situations. I draw upon my years of experience and up-to-date knowledge. I am not afraid of showing that I care for them and I really want to help them out.

On occasion, they will reject my best-laid plans. They will resist my best attempts to sell them my product. They will not want what I have to offer. This is especially difficult when I am sure that my management will likely make them more comfortable, that it will probably lead to alleviation of suffering.

No, thanks.

Inside me a voice starts to talk – “What do you mean no? You can’t be thinking straight. I’m pretty sure I can make you more comfortable. Can you give it at least a try? I just want you to try something which I think has a good chance of helping you.”

Get out of the way son….

It is hard when someone chooses a path that will lead to more suffering, but it is their choice to make. Their right to do what they want at the end of their life. Just as it has been their right to choose what happened during the rest of their life, why does that have to change because they are dying?

It is hard to bear witness to someone else’s suffering when they don’t want to take the treatments we have to offer. I promise people that I will listen to what they want or don’t want and will be guided by them. I have to keep my promise. They have to do what is right for them and their family.

As health care practitioners we are only involved for a brief period of time. Our patients and their families have to live with the decisions they make for the rest of their lives. Generations of a family can be affected by the choices made. They have to do the right thing for themselves and we need to give them the opportunity to do so.

Palace of Care – Maturity Crash Course

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She was still a child when we admitted her to our inpatient unit. 21 years old but she acted more like a teenager. She had been unwell for five years with bone cancer and had undergone many treatments. She had spent a lot of time in hospitals and had moved from her hometown to be closer to live in the same city as the treatment centre. In her last hospital admission, she had been troubled by a racing heartbeat and had been reviewed by heart specialists.

She was nervous on arrival at the hospice, and she wanted us to discuss any changes with her Oncologist. She had been under his care since her first treatment and she wanted him involved in any treatment decisions. We were happy to involve him and discussed our proposed changes with him. He said that he would defer to us when it came to palliative care issues as he felt we had more experience. Over the next week we built up trust with our young patient, and we were able to control her pain well enough that she could go home.

After two weeks she had become unwell with worsened breathing and ended up in the hospital. They scanned her and found cancer in her lungs had worsened. She asked if she could be readmitted to hospice and a transfer was arranged for the same evening. Medications to ease her breathing was started.

She was reviewed on the ward round the following day and was started on high-dose corticosteroids which initially helped her breathing. A few days later she asked to speak to the doctors. She said that she understood that her lungs were in bad condition, and without medication, she would die. She asked if she could stop her medications. She had discussed this with her family and they wanted to support her decisions.

She chose to stop her treatments and wanted nature to take its course. We provided symptom control medications to keep her comfortable. She died a week later.

Between the first and second admissions, she had grown up a lot. A young girl had grown up into a young woman over a few weeks. A brave young woman who took control of her situation and chose to stop active treatments, opting for comfort care only. She went out on her terms and did it her way.

I think therefore I am? – Dropped

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I feel so lost, I feel so alone, aren’t I good enough for you? What did I do wrong? Why did you change so suddenly? I thought you’d always be there for me. I thought you’d have my back.

Many different people may be felt to be the other, this can have a racial basis, or be on a religious basis. People are labeled as other to justify treating them badly, and this is an unjust situation in this day and age. What other justifications are there for bad treatment of our fellow humans?

Palliative care patients may face stigmatisation for being closer to dying than most people. Oh well they’re going to die anyway, so why should we bother taking care of them? Just shove them in the corner and pull the curtain around them, and forget about them. Out of sight and out of mind. Not my problem mate. Who cares they’re dying anyway, not worth me expending any effort on them. I beg to differ, dying people deserve even more respect, as they are about to leave our planet, off to somewhere else, destination unknown. What will happen next? I don’t know.

It hurts to be rejected, to be pushed away, sometimes literally pushed away. I don’t want anything to do with you. Please leave, bad enough when you are trying to find a date, but when you are at the end of your life, how much more hurtful could that feel?

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Palace of Care – Saying No – Part 3

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He was admitted because of uncontrolled nausea and vomiting. We thought it might be a malignant bowel obstruction but his bowel sounds were normal. He would vomit at least three times a day. Strangely the vomiting didn’t seem to bother him, in fact at times he and his wife seemed happy after he vomited. We weren’t sure of what was causing his nausea and vomiting, his blood tests showed evidence of dehydration, but there was nothing obviously reversible going on to explain his symptoms. He looked unwell and after a few days on our ward he appeared more gaunt. Our attempts at controlling his symptoms were not working, we hadn’t solved the mystery yet, until we noticed the half-filled blue glass bottle on his table. “Keep out of direct sunlight.”

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Guest Post – Naomi’s Notes – Mama

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Today was shower day. In preparation, I lit the fire and made the room nice and warm,  laid out her clothes so they would be nice and cosy to get into, just like my mother had done countless times over the years for all her children.

After showering, I raced her down the hallway in her wheelchair into the warm room and proceeded to dress her and blow dry her hair.  She was unable to transfer other than to put her arms around my waist and hold onto me as I put her into her favourite chair.

“Well,  now you have to pay me,” I announced.

She looked at me suspiciously until  I said the cost of the shower was two kisses.

She smiled and gave me five kisses and said,  “Oh I have overpaid you.”

“Don’t worry,” I replied, “I have change.”  I kissed her cheek three times;  She laughed just like she used to laugh and then I made her a hot cup of tea.  After the tea she fell asleep in her chair.  She looked exhausted from the effort of showering and slept for an hour.

When people came to visit she would try and sit up and talk with them but after a while she was just so exhausted.  Her kidney function was getting worse.

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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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I think therefore I am? – It’s down to you now, you wanna be free?*

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*From Cliff Richard’s We don’t talk anymore: https://www.musixmatch.com/lyrics/Cliff-Richard/We-Don-t-Talk-Anymore-1987-Digital-Remaster

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In Aotearoa/New Zealand the End of Life Choice Act 2019 will be enacted into law on Sunday 7th November 2021. Written in the voice of someone who is considering accessing assisted dying is a further conversation that they might have with NZ Hospice/Palliative Care, if only they would deign to listen.

The last time we talked I was not at my best, I was angry, upset and scared. I’ve had time to reflect and have looked at things from some other viewpoints. This is not an apology because I need you to see me as I am, I don’t want to have to pretend in front of you. I need you to understand how I feel, and what I am going through.

Thank you for not running away, like the others did. You said that you have similarly emotionally intense conversations all of the time, and that you have been trained to be able to handle them. You certainly used it to take the opportunity to get to know me better, and to explore my fears.

That being said,  I shouldn’t have sworn at you, that is not me. I am usually much better at controlling myself. My anger was not just directed at you, I’ve  been through many frustrating interactions during this illness journey, and it all just exploded the last time we met.

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