Category Archives: Ideas

Palace of Care – A Reluctant Patient

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Photo by DDP on Unsplash

I first met our reluctant patient in the outpatient clinic with his girlfriend. It had taken a number of phone calls before he would come in for assessment. He was scared of hospice and had resisted his Oncologist referring him to us. He didn’t know what we were about and what he didn’t know frightened him.

He had been unwell with cancer for over a year with severe pain making him unable to sit or lie down for more than an hour at a time. Sleep was difficult for him and he was woken up several times a night by burning pain that spread down his right leg. He wasn’t keen on any changes in medication, and it took much negotiation for him to allow us to increase the doses of the pain relief agents he was already taking. He didn’t want to consider anything new, just yet. As his pain was so severe I offered to admit him into the inpatient unit but he wanted to stay at home.

Over the next month, his pain did improve but any relief would only last for a few days at best. We again offered to admit him for pain control but he still wasn’t ready. Some weeks later the pain had worsened bringing tears to his eyes. His mother and girlfriend were exhausted and felt helpless as they couldn’t help reduce hisWith encouragement from his mother and girlfriend he agreed to be admitted.

We started him on a different opioid that afternoon. The next morning he was full of smiles. He told us he was pain-free for the first time in two years. He stayed a few more days as we helped him with other issues, and then he went home. As well as good pain control we had built a trusting relationship that would help during his next admissions.

Palace of Care – Maturity Crash Course

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Photo by Kyle Glenn on Unsplash

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.

Palace of Care – RIP Technoblade

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Photo by 卡晨 on Unsplash

Today tragedy leaked from the internet and into my home and many millions of homes all over the world. 23-year-old Minecraft YouTuber Technoblade has died. He had written the last message to his fans only eight hours before he died. He had asked his dad to read out his message on this video. If you watch the video make sure you have some tissues at hand.

Technoblade was diagnosed with cancer in August 2021 and continued to post his popular videos even whilst undergoing various cancer treatments. With his usual generosity, he continued to share his entertaining insights with his 10 million followers.

Millions of ‘kids’ all over the world have learnt about the reality of life with cancer. Today they have experienced the death of someone who they may have gotten to know over many years of watching his videos. Grief has appeared on their drop-down menus, and they may not know how to deal with these unknown feelings. A huge reality check has occurred and the stark difference in real life is there is no respawning.

An online companion can no longer keep them company. Loss of life has led to a loss of childhood innocence. Please take care of your kids as they mourn during this sad day on the internet.

Palace of Care – Palliative Plumbing

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Photo by Paolo Chiabrando on Unsplash

Our patient was dying of end-stage cancer, it had spread throughout his body causing significant pain. He had been having trouble passing urine, over the last two days. This had worsened and our ultrasound bladder scan showed urinary retention with a collection of 1.5L. One of the more painful conditions that people can have. The bladder’s walls are elastic but are not meant to stretch that far. Many nerve endings were firing off pain signals, our patient writhed in his bed. His wife and daughter were distressed seeing their lovely man in such discomfort.

The doctor on call was called in at 1 am after the nurse had tried twice to catheterise our patient without success. The urinary catheter could not pass through a blockage despite the nurse trying all the usual tricks. The doctor attempted catheterisation three times before calling me in. I arrived just after 2 am and decided that I would have to perform a more invasive procedure. The patient was too distressed, he was too unwell to be transferred to the hospital. I would have to drain his bladder using a needle, something I had never done before in my 20 years of medical practice.

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Palace of Care – A Self-Sufficient Family

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Photo by Jay Wennington on Unsplash

One of the cruellest consequences of COVID lockdowns was the restriction that we had to place on visitor numbers. We were generous in that we would allow each of our patients up to four named visitors, but this still fell short when it came to families with more than four members. We acted with humanity and compassion, thinking to ourselves how would we feel if it was us in their situation? But what do you do when someone has 15 children? It is difficult for a family to choose who gets to come in, and who has to stay out. Video chat technology allowed for virtual visits but they were no replacement for in-person visits.

Our patient was a man in his 50s who had six children, the two eldest lived out of town. The four younger children were keen to spend time with their Dad, and their Mum struggled to choose who would be the nominated ones for any given day. The family had always been close and the parents had home-schooled their children. They had always done things in their way. Having Dad critically unwell and away from home added to the overall disruption of their family life. Our team’s opinion was that our patient only had limited time left to live. Given the circumstances, we flexed our approach and allowed the four younger children to visit alongside their mother.

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Palace of Care – Ripples

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Photo by David Becker on Unsplash

Please.

Remember that.

Death.

Of one.

Affects their partner.

Affects children.

Affects their siblings.

Affects their extended family.

Affects the community belonged to.

Nothing is ever.

The same.

Again.

Palace of Care – Nerve Block

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Photo by Manuel Chinchilla on Unsplash

I don’t think of myself as a proceduralist. I don’t like performing invasive procedures as I don’t like to cause pain if I can avoid it. I will do them when they are necessary but it is not a natural fit for me.

The patient was a 39-year-old mother of a 7-year-old son. She was admitted for pain control and I thought she would not have much time left to live. She had known this herself for the past six months. In preparation, she had purposefully reconnected with her ex-husband the father of her child. She wanted to make sure that they would have a loving relationship after she had died. She had been reluctant to come into hospice as she had wanted to spend as much time as possible with her son and other family members at home.

We wanted to sort out her pain as quickly as possible to get her back home. We managed to sort it out within the first three days. This was good as she had met with our social worker and the final adjustments to her will were being made. Her lawyer had been engaged and would be arriving in three days for her to sign the final papers. It was important to have this sorted out as she wanted her house to be transferred to her ex-husband for him to have a house to raise their son in. She had worked hard to buy her house, it was her pride and joy. She wanted her son to have a stable home environment.

Overnight she went to the toilet but on the way back to her room she heard a loud crack from her right hip, followed by overwhelming pain. She could no longer support her weight and managed to call out for help. The nurses needed to use the lifting hoist to get her back in bed, which made her scream.

I reviewed her the following morning and I recognised a familiar pattern. Shortened leg, twisted at a non-anatomical angle, tender to touch and excruciating pain with the slightest of movements. Fractured hip, likely broken through a metastatic deposit. We talked about going to the hospital but she did not want to go anywhere. She said that she had already been to the hospital too many times in the past. She thought her time was limited and she wanted to spend it in hospice.

We gave her stronger pain relief which relieved her pain but because of her poor overall condition, it made her sleepier. She didn’t want to be sleepy, as she still needed to sign her new will. Her son’s future welfare needed to be sorted out before she died.

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I think therefore I am? – Scarce Energy

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Photo by John Cameron on Unsplash

I encourage patients to blame me for shortening visit times, “the doctor said my visitors could only stay for 15 minutes as he wanted me to rest more.” I don’t mind being the bad guy, it is difficult for people to turn visitors away but at times they need to do it. Most people understand and will self-limit visits. Others are not so insightful and will outstay their welcome.

“They have come all that way to see me,” which is nice but some of the visits might be driven by guilt. Guilt from not having seen the patient for a long time. Whose needs are being met by the visit, the patient’s or the visitor’s?

Like petrol prices currently, energy is at a premium and people have to be careful how they spend their energy. Their battery continues to flatten and cannot be recharged again. The principles of energy conservation need to be applied to everything they do. Opportunity cost has never been more costly. Spending energy on one thing means something else cannot be done. This is a tough concept to understand unless you have experienced an illness that results in chronic fatigue, such as cancer, organ failure, and old age.

Life is not normal anymore. Life becomes full of trade-offs. The cruelty of life-limiting illnesses is they steal energy away but lead to appetite loss. Just when people need nutrition the most they lose the ability to derive the benefits of eating. Good symptom control can help a person feel more like their usual self, but cannot turn back time.
Simple activities of daily living become anything but simple for unwell people.

Losses accumulate day by day and each one is grieved. An ever-changing situation. It can be hard to catch up with, to know where you are, as things continue to change. Nothing stays the same for long. “Just let me have a small pause, a chance to find my bearings, please, just for a short time let me stop this rollercoaster ride. It’s going too fast and I feel dizzy. Please don’t waste my time or energy.”

I think therefore I am? – Gratitude Exercise

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Here’s something you could try doing that my writing in community friend Martha shared with me this week:

An assignment that literally changed my students’ lives. Extra credit (optional, and adds points to overall score). Make a list of 50 things you are grateful for in your life. Must use following format:

I am grateful for _________________ because __________________________.

One pt. for each line. Must complete 50. 49 won’t do. Must fill BOTH blanks for each line. You will get 50 points added to your grade.

Example: I am grateful for my grandma, because she makes me breakfast every morning.

I could tell you so many stories about this assignment! Not everyone chooses to do it. And sadly, not everyone is able to think of 50. If not being able to complete the assignment is perceived by the student as a problem, I see that as a good thing. I love coaching them to see things in their life to be grateful for. I can tell when a student has stretched and really starts to “get it.”

At the time I was in Phoenix, AZ, and I often got this response (one of my favorites) included in the list.

I’m grateful for my shoes, because without them I couldn’t walk anywhere when the sidewalk is so hot.

The last question of the assignment: Now that you’ve completed your list, look inside yourself. How do you feel? Has anything shifted?

Once in a while I would get a “no.” But of the 70% who actually answered the last question, almost everyone said that they experienced a shift. Some said they felt happier or more positive, while others said they realized they had so many good things in their lives that they hadn’t actually realized.

Sneak Preview from Bedside Lessons – Chapter 65 – Please Take A Seat

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Photo by Stephen Audu on Unsplash

Family meetings are common in healthcare settings and are organised to convey a point of view or to try to bring together disparate points of view. These events may be the first chance that some of the key stakeholders, i.e. the family and the healthcare team, have to meet each other. First impressions, as within any first meeting, are important. As you can only meet for the first time once, you’d better do your best to make sure it goes well. To establish a trusting therapeutic relationship between the patient, their family and the healthcare team, rapport must be established quickly. Every encounter can count, but not everything can be planned for.
“Come in, please take a seat.” Oops not enough seats, I didn’t think there would be so many people joining us. “I’ll get some more chairs.”

“No doctor, it’s okay, we’re Islanders, we’re used to sitting on the floor.” He sat down on the floor in a cross-legged position and the rest of his family followed.
While dropping to the floor and re-arranging my legs into a well-versed pose, “I’m an Islander too, and I’m used to sitting on the floor too.” I was joined by my cross-legged team member. Eyes were in contact and were levelled, as were some of the power differentials. Serious issues were discussed in a different but more trusting fashion.

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