Category Archives: Practice

Palace of Care – Sat Sri Akal

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I prepared to see our patient and their spouse. They had been doing well until the past week. Then the weakness and fatigue worsened. They didn’t have the strength to leave the bed. Their spouse looked after them well. Their children were parents too. They were proud of their grandchildren. A close family but COVID-enforced separation had meant they had only seen one of their children once in two years. The same two years that cancer had taken over.

The spouse was worried about sedation from medications. The patient was reported to be in a lot of pain and could use more medication. Breathing was laboured. The patient had not spoken clearly in the 48 hours preceding the admission. As soon as I entered the room I noted the distress on the patient’s face, mirrored by the look of concern worn by their spouse. I needed to establish rapport quickly, as the suffering needed to be attended to urgently. I recognised the traditional turban and greeted them with, “Sat Sri Akal.” A look of surprised appreciation crossed over the spouse’s face. The patient stared blankly at the ceiling in a confused manner.

“They’ve been uncomfortable overnight with pain. I need to do something about it. I’m worried that it isn’t safe to swallow anymore. This is what happens at the end of life when someone is dying.”

“Can I feed them, they haven’t eaten since yesterday.”

“When someone is very unwell they can’t handle the food. They can’t swallow safely and it might end up in the lungs. It might cause vomiting or diarrhoea. I don’t want to make the situation worse or increase the suffering. We need to give medications by injections, under the skin.”

“Subcutaneous?”

“Yes, that’s right. It will be the safest way to give medications, to make sure they go where they are needed.”

“Okay, how much time do we have left?”

“I’m sorry, your spouse is so unwell, they might only have hours to days left to live. They could die at any time. I’m sorry.”

“No, no need to be sorry. It is part of life, it is something that we have to face at some stage.”

“We will do our best to make them comfortable, no matter how much time is left, we will keep on trying. We want to calm down the pain, calm down the breathing, calm down nausea and distress”

“Thank you, doctor.”

“How long have you been together?”

“44 years.”

“I’m going to change the medications now. Please let us know if you or your spouse need anything. Take care.”

I think therefore I am? – FAQs

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“You have to be special to work in Hospice/Palliative Care.”

“I’ve developed specialised skills over many years of training and practice.”

“You’re an angel.”

“No, I’m human just like you are. I have feelings and I am affected by what happens to the people I look after. I’ve learnt how to handle it, but it has taken a lot of work to be able to do so.”

“I don’t know how you do what you do. I couldn’t do it.”

“Well some days I can’t do it either, but those days are few and far between. Dealing with death and dying on a daily basis can be stressful. Self-care is essential as is team care. Wellbeing practices have become part of my daily routine.”

“Working in Hospice/Palliative Care must be so depressing.”

“No, it isn’t. Sure we see more than our fair share of tragic situations but we can still make a difference. How would it have been for the patient and their family if we hadn’t been there?”

“What do you enjoy most about your job?

“Seeing patients and their families. Having a laugh with them.”

“What’s the most important thing you can do for your patients?”

“Listen to them. Find out what they need. Find out what goals they are still trying to achieve, even at the end of life.”

Palace of Care – Leave Request

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Photo by Kevin Gent on Unsplash

“Doctor, can I go out on leave this weekend?”

“What have you got planned?”

“I’m going home to spend time with my family, to see my children at home.”

“Will you be doing any cooking or cleaning?”

“No, I learnt my lesson last weekend.”

“You did too much?”

“Yes, I didn’t think to ask for help, I wanted to do the cooking all by myself. It used to be so easy. If I had allowed them to chop some vegetables I wouldn’t have been so tired.”

“It was a struggle wasn’t it?”

“Yes, I became irritated and grumpy.”

“You can certainly go home on leave but I don’t want you doing any work. You are there to rest and spend time with your kids. I don’t want you doing the housework.”

“I’ve had to let it go. After I am gone they will be in charge of the house and do things their own way.”

“It must have been hard for you to let go.”

“I don’t have much time left or energy.”

“You’re human, not superhuman.”

“Yes.”

“Are you going shopping again?”

“Yes, I have to buy clothes for the children…for them to wear to my funeral.”

“Buying the clothes sounds important to you.”

“I’ve always wanted them to look good. It’s important to look your best at all times.”

“Have a good weekend.”

“You too Doctor, see you Monday.”

Palace of Care – A Stitch in Time

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Photo by Thomas Griggs on Unsplash

Our patient was dying and we had prepared her family for her imminent death. Their Imam had visited and they had already engaged the services of an Islamic funeral director. Their custom was for the body to be buried within 12 hours or before sunset. The timing was important and we wanted to avoid any hold-ups if possible. s

The eldest son had a special request. His mother had a stoma in place, this allowed solid bodily wastes to be collected in a small plastic bag. He asked if our staff would be able to sew up the stoma after death. He said their tradition was for the body not to have any foreign objects present. The funeral director had already told them that they could not help with this post-mortem procedure. The concern was there would be soiling after the stoma bag was removed. They wanted everything kept as clean as possible thus sewing up the stoma would prevent it from leaking.

I asked my medical team but no one available was keen to help. I would’ve been happy to come back to suture up the stoma myself but I was due to leave for an overseas trip the next morning. I asked around our other staff and three nurses with suturing experience put their hands up.

Our patient died the next day and her stoma was neatly sewn up by one of the nurses before the funeral director came to collect the body. The family were grateful and were able to bury within their customary timeframe. I was proud that our team had been able to help the family in their time of need.

Palace of Care – Existential Devastation

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I was worried about my patient. Swallowing was compromised. Their thinking was compromised. Oral intake was minimal. More of the day was taken over by the need to sleep. Pain control was still inadequate. They felt so out of sorts, miserable in all aspects of their being. A proud person who had worked hard to overcome many difficulties. Trying harder had worked throughout life. The same attitude prevailed during the cancer battle. Pushing themselves harder and harder, no matter how terrible the side effects or the pain. Sheer determination and willpower saw them through.

This came at the cost of themself. They hadn’t felt normal for a long time. The physical pain could be tolerated but the inner voice of existential distress had become unbearable in recent weeks. It could not be ignored. Nothing felt right. It was not supposed to be like this. They should have been planning for a family holiday rather than their own funeral to ease the burden on the family. A casket had been chosen and of course, it had to be in the favourite colour. Different from most people’s preferences but being different was nothing new. Growing up as an immigrant in a mostly white country you are used to being different.

There was so much that had been planned for the future, the future stolen away by cancer. Cancer took away too much and had not finished. It was taking precious life away, draining the internal battery constantly. The image in the mirror was shrinking day by day. The sense of intactness was long gone. Feeling like themself, was but a distant memory from a bygone era, from someone else’s life. There was still too much to do. The need to get everything just right had always been there, now it was all-consuming. Too many competing priorities and time, precious time, was running out. Too many thoughts smashing against each other in their head. Unable to make sense of it all. The nights were the worst time of all. The long lonely nights were when the thoughts reached their crescendo and then deteriorated into cacophony.

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Palace of Care – Earning Trust

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It had taken months to earn their trust. I had to show a willingness to listen. To demonstrate flexibility in shared decision-making. Each clinic visit involved negotiations. I thought I could make them more comfortable with my medications. They did not want to try my medications. I pushed, and they pushed back. I pulled, and they pulled away. I made lots of suggestions, but most of them were shot down. The interactions were always polite, but it was difficult to engage.

I was sure the treatments were making them feel worse, but they would’ve done anything to live longer, no matter what the personal cost. 12 cycles of chemotherapy meant eight months of being imprisoned mostly at home. Unable to venture far from the toilet because of the almost constant diarrhoea. Always accompanied by crampy abdominal pain, day and night. Long days and longer, lonely nights. There was no way to rest properly apart from the few days between cycles when they’d feel almost normal again. Then it was time to start the next cycle.

They had planned a trip with their family. They wanted the children to travel with them to far-off lands. They wanted to create a memory of an exciting family trip. The journey was booked for six months. I was worried about our patient living through the next four months let alone six months. I talked about smaller trips closer to home. The children just want to spend time with their parents. It doesn’t have to be fancy. Short day trips would be just as memorable. The children missed their parent’s cooking. Their other parent didn’t cook as well despite their best efforts. The kids longed for a taste of normality.

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Palace of Care – No Surprises

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They’d been unwell with cancer for months and it had led to them becoming bed-bound. Their children had tried to look after them to the best of their abilities. The pain had worsened recently and they’d felt more and more fatigued. The family was not coping well and needed help. When admission to hospice was suggested the family had considered it over a few days before agreeing to it.

On arrival, the patient was in pain but was able to make themselves understood easily. Pain relief was provided with good effect. A family member was rostered to be available all day and all night long. Just in case our patient needed anything overnight.

On review the next morning, the patient needed several extra pain relief doses. We incorporated the extra doses into the syringe driver which was running continuously. We talked to the patient’s son about what was happening. We talked about how worried we were, that she might continue to deteriorate further and that we did not want there to be any surprises.

The next morning and our patient’s pain was controlled but they were no longer speaking clearly. It was difficult to understand their speech, and for them to understand our speech. A marked difference compared to yesterday. More family members had come to visit and we spoke to the eldest son. We brought him up to date with what was happening to his parent. Our patient was dying and possibly had days left to live.

Our patient had a moist cough and was troubled by worsened dyspnoea. We explained that we would not recommend antibiotic treatment if there was a chest infection, given the end-stage cancer our patient was troubled by. We needed to make some changes to their medication mixture. The son appreciated what we were doing, and was going to let the rest of the family know what was going to happen. No surprises.

Palace of Care – Hospice Sounds

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They hadn’t had much to be happy about over the past year. A progressive disease, no longer curable given how far it had spread throughout the body. They were determined to continue their chemotherapy despite the demoralising side effects. Most people would’ve given up after two cycles let alone completing 12 cycles.

A strong-willed person with too much to live for. It was the uncertainty that troubled them the most. They knew death was coming and had tried their best to prepare for it. The loss of control troubled them deeply. They found the advance care planning handbook to be useful in covering the practicalities of this part of life. Funeral arrangements were pre-planned, their will was finalised.

They’d been offered an inpatient admission months ago but they were not ready for it.

“Not yet doctor.”

Some months later they’d become more unwell, wracked with pain and distress in the hospital. They were glad to be admitted to our inpatient unit, and we worked with them to bring their pain under control and they were able to return home.

Over the next month, the rate of deterioration worsened. As per their request, we tried to keep them at home with their partner and their children. They came for an outpatient clinic appointment and ended up needing to stay in as an inpatient.

“How long have I got left?”

“I’m not sure, could be as short as weeks. Could be longer, most people don’t have the level of inner strength you do.”

Once comfortable they were able to relax and even smile. They were on the receiving end of input from the local Dad Joke specialist. Laughter was heard coming out of the room that last week had only witnessed tears. Their laughter was one of my best achievements of the past week.

Palace of Care – Mixed vs. Clear Messages

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Photo by Darius Bashar on Unsplash

I was worried he would die before the day was over. When I first met him he was hunched over in bed, his jaw clenched tight, his upper teeth were grinding into his lower teeth. His breaths short ragged grasps. In extremis, with tears dripping onto the tousled folds of the bedclothes. His family’s faces replaced by masks of terror. The tension in the room was thick, the silence as we all held our breath as the patient grunted in agony. His wet eyes begged me to help him.

“Your pain relief isn’t strong enough. I’ll make some changes to get you more comfortable. I’m very worried about you. You might get much worse. Let’s work on your pain first.”

I headed off to prescribe the higher doses and to ask the nurses to prepare them for our patient. He was another classic haematology patient. His discharge summary had recounted the breaking of bad news the day before. There were no further treatments available to stop the blood cancer. The team recommended no further transfusions as they would not be helpful. The next morning the standard blood tests had been repeated, and no surprise, all the blood counts were low, including a platelet count below 10. This meant the patient was at risk of spontaneous bleeds. The medical teams reaction, was to prescribe a platelet transfusion. The hospice doctors who read the notes were confused by this action. How did the patient and his family feel? The day before they had been told no further transfusions, and then less than 24 hours later, he was being transfused.

Over the weekend we managed to control his pain and he spent some time with his family. The highlight was a visit from his children before they went away for a long weekend trip. I was surprised that his weekend went well. He spent more time with his parents and siblings and other family. He asked our staff what was going on, as he was unsure what the treatment plan was.

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I think therefore I am? – Not On My Watch

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It distresses me to hear on the grapevine of how patients, who have chosen to have assisted dying, in other palliative care units have been treated by staff. Following the revelation of their wishes I have heard of staff treating the patient differently. Not wanting to engage with them anymore, giving them the ‘cold shoulder,’ because of the choice they have made. Some staff refuse to attend the patient even if they push the call button when they need help.

It’s called discrimination. Treating people differently because they are different. In these cases because they have chosen something the staff do not support. A difference of opinion leads to stigmatisation and a change in the mindset of the caregiver. This does not fit in with my own care philosophy. I will not abandon someone due to the choices they make not fitting with my own beliefs. I am in my role for the sake of the patient and their family. They are not there for the sake of my existence.

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