Palace of Care – Doting Children

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“The Oncologist told us they would only live for another three weeks.”

“When was that?”

“Three months ago.”

“The good care you and your sibling provided kept them going. Now they are tired, and their body can’t handle the cancer anymore.”

“We are at breaking point ourselves. We can’t sleep well, and the tears keep coming.”

“You are both very close to your parent, you have looked after them well.”

“The last months had been hard, but the last weeks have been terrible. We have had to help with everything.”

“They are exhausted. Yesterday they told me they thought their time was short, that death would happen soon. I agree with them. We will get them through this, and get you and your sibling through this too.”

“The phlegm is causing them distress, and the breathing. They couldn’t relax last night. The medications helped briefly but then they couldn’t lie still. I kept awake too. They keep on asking for water, but it will go into the lung. Their swallowing is getting worse.”

“If it will make them feel better they can have some water. It won’t make things much worse but might bring them some comfort. If they developed an infection I wouldn’t treat it, as it might be gentler to die of the infection rather than dying of cancer. We’ll change the medications to make them more comfortable.”

“Please do, make them comfortable. Too much suffering already. They were always proud of their appearance but in the last weeks, no energy to do anything.”

“They’ve hated not being able to do what they want?”

“Yes, they even asked about assisted dying. They’ve always been so independent, not being able to do anything for themselves has been awful.”

“Natural death is going to happen soon, they wouldn’t make it through the assisted dying assessment process. They’re likely going to fall asleep soon. We’ll keep them comfortable.”

“Thank you doctor, can we stay here in the hospice.”

“Of course, you all need to stay here, we’ll look after you all.”

Palace of Care – Confusion

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We were confused by the discharge letter. Our patient had been transferred from the hospital after a two-week admission. During the admission, the Oncology treatments had been stopped. On discharge, it appeared that the medications had been restarted. The Oncologist’s plan was unclear. On the second day, the patient developed a new abdominal pain. The pain was so severe that the patient felt they were ready to die. We changed their pain relief and also tried to cover the shortness of breath. By the afternoon the patient was more comfortable and able to sleep. The family had received a phone call asking for the patient to return to the hospital for further treatment. This surprised the family and our hospice team as the patient had barely been in the inpatient unit for 24 hours, and the hospital asked them to return. We called Oncology to find out what was going on. They wanted to give radiotherapy treatment to the patient’s back, for pain relief. We said we would see how the patient was the next morning as we were unsure if they’d be well enough to return to the hospital.

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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 – I’m Not Telling You What To Do

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I was asked to speak to the patient’s son. His mother was unwell and deteriorating. Her son was not medically trained but was forthright in his opinions. He thought his mother had simple constipation and all she needed was simple laxatives. He was more than assertive in his requests for treatment, taking a more directional approach.

“Look, I’m not telling you what to do, but…”

“Actually, you are telling me what to do. I need to tell you what I need to do for your mother. She’s very unwell, and is not just constipation going on. I think she has a bowel obstruction caused by the cancer. It is causing severe pain, nausea and vomiting. I am very worried about her. I have seen her condition worsening every day. I don’t think she is going to get better.”

“You mean she won’t recover?”

“She is trying her best to do so, but I think she probably won’t be able to. She’s too unwell.”

“What can you do for her?”

“We can try to make her more comfortable. We’re going to have to use injectable medications as I’m worried she won’t be able to swallow soon. Do you have any questions?”

“No, please do your best for my mother. She raised us all, and she always worked so hard. We wouldn’t be here if it wasn’t for her. Please look after her. “

“We will.”

I think therefore I am? – How Much Is Enough?

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How much is enough? This is a question not asked often enough of ourselves.

Many of my patients had been saving their fun times, their big and only overseas trip until their retirement. I’ve witnessed many tragedies as people retired and become unwell. The opportunity to enjoy their hard-earned reward stolen from them by illness. Falling unwell soon after retirement. Going from the working life to the dying life within a matter of months.

Balance must be sought and acted upon. That’s what my Aunty Helen always tried to teach me. It is good to scrimp and save but enjoy yourself along the way, as you may never get the chance to. I’ve seen it in the stories of the patients I look after. They saved up all their enjoyment until the end but were too unwell to enjoy anything.

Working in palliative care you’d think we’d learn the lesson – life is too short. Seeing this stark reality daily through others’ experiences could act as a stimulant to action. Often it doesn’t, we practitioners are just as human, just as blind as everyone else. It won’t happen to me. I’ll be one of the lucky ones. But it could. Happen to anyone.

Are you still working towards your goals and values? Are you being true to yourself and your life mission?

How much is enough?

It depends on who you ask, everyone will have answers which match their bespoke lives.

How much money is enough?

How many investments owned is enough?

How many degrees studied is enough?

How many books written is enough?

How much time is enough?

Never enough time.

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.

Palace of Care – Calm Personified

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My patient arrived in 1970s New Zealand (NZ) a refugee. One of the millions of innocent victims of a proxy war. She and her husband had worked hard, and raised their family well. Their children had grown up and had made good lives for themselves and their own families. She was the proud grandmother of six, with ages ranging between 2 to 18 years old. She was admitted for end of life care and had been comfortable. Her family attributed this to her Buddhist beliefs. She had always been the calm one in their family. “Dad was the fiery one, and he had died about seven years ago.” She had carried on with life, taking even the death of her partner with calm. She her family that she would see him in the next life. She wasn’t sure in what form he would be reincarnated, but she was sure they would meet him again.

She had lived a calm life and her family were not surprised that her dying process was also calm. She didn’t need much in the way of medications as she was mostly comfortable. She lost consciousness and we warned the family that death was likely imminent, that she would be dying soon. Two weeks passed and she was still alive. She remained comatose and non-responsive. She had not been alert enough to have any oral intake. The family made sure her mouth was kept moist.

Her family asked us how long she had left to live. We explained that from our experience that other patients in similar situation likely would have died two weeks ago. Our science could not explain why she was still alive. We asked if she had any unfinished business, was there anyone that she had not seen yet? The family gave us a puzzled look, she had seen everyone that she needed to see. Or so they thought. As clinicians we all wondered, what she was waiting for?

We found our answer a few days later. As I was heading upstairs for lunch, three men walked into the hospice. One of them walked ahead, followed by two others. The two men wore green uniforms and looked as if they could handle themselves. The man in front was a short, Asian man in his forties. His hands were cuffed together. He was led to his mother’s room and spent some time saying goodbye to her. He cried as he had not seen her for two years he had served in prison.

She may have been comatose and thought to be insensate, but she knew her son had come to say goodbye.

She died two hours after her son’s visit.

Palace of Care – A Father’s Grief

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I went to see the new patient who had just arrived by ambulance. A Chinese man in his 30s who was drowsy and confused. He wasn’t able to move out of bed, and needed full assistance with all cares. He was accompanied by his wife and his father. Our patient’s English was reported as good but he wasn’t alert enough to answer many questions.

“Where are you sore?”

Hands pointed to his abdomen as he grimaced.

His father said, “He’s always considered other people before himself. That’s how he’s been since he was a young boy.”

I made some adjustments to the patient’s medication to try to ease the suffering.

His father came to speak to me, and I ushered him into a small meeting room.

He was angry and devastated. He spoke to me in Cantonese which I have some understanding of, thanks to a childhood of watching Hong Kong TV series on VHS video tapes. My usual slow process with Cantonese, is to convert it into Mandarin and then into English. I have trouble when trying to go back the other way, so don’t speak Cantonese.

He recounted the clinic appointment they had attended yesterday. They had driven from home to the Oncology Centre. His son required a wheelchair as he could not walk the long distances. The Oncology registrar that met them was Chinese and spoke Cantonese. He asked if his son could lie on the bed as he was tired from sitting up for hours to get to clinic. The registrar answered no, that the clinic was too busy today. This surprised the father who said, “Couldn’t they see how unwell he was? Then they told us bluntly, there was nothing they could do for my son. That he was dying. I was so angry that I wanted to complain, but my son wouldn’t let me, he told me to leave it, and that he wanted to go home.” I listened to him for 45 minutes and talked to him in Mandarin which was our shared second language. He had calmed down and was able to head back into his son’s room.

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Assistance for Australians with administrative tasks after someone has died

Honestly, the very last thing you want to do when you are grieving is wade through the piles of administrative work that’s needed after someone you love has died.


I remember after my mum died, doing to the Post Office to request that her mail be diverted to me. Are you the Power of Attorney? Queried a the young Post Office worker. Well, yes I am, but as the person has died, the Powers of Attorney have ended So you need to ask me if I am the Executor of the Estate.
Her: …..

Me:….

Her: Are you the Executor of the Estate?

Me: Why yes, yes I am.

Or CItylink. Would not tell me why my mum’s owing balance was cos of privacy. But I wanted to pay it off and close it. Can we have a certified copy of the death certificate. OMG. If I paid you $50 would that cover it? $100? No, can’t say., privacy. Gah!

I have fortunately not had the need to use this new service https://deathnotification.gov.au/ but it is a fantastic idea and I look forward to hearing how it goes. The Australian Death Notification Service (sorry to our cousins over the ditch) takes on much of the administrative burden after someone dies for you, and it’s free. What a fantastic idea! It’s supported by all the States and various organisations.

Let us know if you use it or hear of anyone who’s used it.

https://deathnotification.gov.au/


Palace of Care – Family Reunion

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His sister and nieces pushed him in via wheelchair. His skin was a yellowish grey colour. According to his family it had been a huge change from when he had arrived in town last week. Then he had been well and was able to dance with his nieces. Now he couldn’t walk without assistance as he was too weak and fatigued.

He’d been diagnosed with end-stage cancer only months ago, and arrangements had been made for him to go into residential care. As he deteriorated, his elder sister and her daughters wanted to look after him. They picked him up from his residential care facility and moved him into his elder sister’s house in Auckland.

Over the course of his first week with his family he became more unwell. Nerve related pain from his cancer worsened and led to his hospice admission. His medications were adjusted to make him more comfortable. The family arranged for a reunion. His elder sister came down to see him.

All he wanted to do was sleep. He had no appetite.

He enjoyed the family reunion, it had been years since he and his siblings had been in the same room together.

On his final day he became comatose. His older brothers came to see him in the morning, after travelling two hours by car. They talked about when they had all been young. I explained that he was critically unwell and could die at anytime.

His sisters came back to see him, and within minutes he had taken his final breath.

Rest in peace family man.