Category Archives: death

Palace of Care – Flashback

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Photo by Marek Studzinski on Unsplash

It had been over two years since we had last met. Memories of the day came back to me in flashes.

I welcomed the family to our venue, meeting family members who had travelled from afar to be there. I remember not wanting to intrude, to be helpful but not in their way. This was her day and I didn’t want to waste any of her precious time.

I recall how it felt to walk back into the room three hours later. With experience, you can measure the emotional temperature of the room in an instant. There was warmth, there was talk of happy memories, there was love. There was laughter, there were tears. Favourite foods and drinks were being shared. There was champagne, there was Strawberry Rocky Road ice cream on sticks. People were gathered for a celebration of a life. A life cut short by major illness, a life interrupted by debility and indignity.

It was still early on in our experience, only the third time we had hosted. It was nice. In the last hour, everyone had the chance to say their goodbyes in the privacy of the bedroom. The doctor arrived and was not constrained by time, he wanted her to take as much time as she needed. It was all about what she wanted, that’s why we had all gathered together. To be with her at the end time of her choosing. Family, friends and healthcare professionals assembled for a final farewell.

The room was full to the brim. The question was asked again, “Are you sure you want this.” The same slurred but steadfast answer, “Yes,” steely resolve obvious in her focused eyes. Making this decision had brought her back not just some control, but had also brought back her determined personality. She had seemed more like herself than she had for years. She was going to leave on her terms, of her own volition.

The last thing she said was, “I love you,” as she hugged her father. She held her son’s hand as she fell asleep for the final time.

Death.

Assisted.

Love.

Relief.

Tears.

Hugs.

Rest.

In.

Peace.

Brave.

Lady.

Palace of Care – Far Too Young

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Photo by Rhii Photography on Unsplash

For most of my time in medical school, I thought I was going to train to become a paediatrician. That all changed after I went to Taiwan to do my medical elective in Paediatric Oncology. After five weeks on the child cancer ward, I realised I couldn’t become a paediatrician. I found I couldn’t handle working with critically unwell and dying children. I decided to become an adults-only doctor and didn’t look after children anymore.

Fast forward 11 years and I was in the final year of my Palliative Medicine training, and I was working in the local hospice. In New Zealand, the definition of adults is those 16 years old and over. We had admitted a 16-year-old immigrant schoolgirl and she was dying of metastatic bowel cancer. It is highly unusual to have bowel cancer at such a young age. What she had was aggressive and deadly. Physically it was challenging to control her symptoms but that was the easier part of dealing with her case. Looking after such a young person made the case difficult for me and other staff members. She was the same age as some staff members’ children or grandchildren. Most of us were not used to working professionally with adolescents.

We had admitted her for end-of-life care and it looked like she had limited time left. The prospect of her dying alone made all of us feel uncomfortable. The girl needed parental support but the girl’s mother had died and her father had to go back to their home country to deal with urgent matters. She had no other family and was alone in New Zealand, apart from similarly aged school friends. How could we help her through this?

Her cries for help would be answered by a church pastor, who stepped in and became a mother figure for our young patient. This lady moved in and provided motherly support during the toughest of times. The pastor and her husband (also a pastor) arranged for the girl’s father to return to New Zealand. The pastor stayed with the girl at our hospice for the last weeks of her short life.

It was sad that our young patient was dying, but it was so nice that the pastor was there to provide maternal support. It was good to know that there were still some good people around who could be counted on. Our patient was kept comfortable and died after her father had come back from overseas. In many ways a memorable case of someone who died far too young.

Palace of Care – Staying Alive

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Photo by Philippe Leone on Unsplash

Doctor yesterday afternoon when my brother arrived Dad woke up. They were able to talk to each other overnight.

Wow. I was not expecting him to wake up again. I was very worried about him yesterday.

Yes, we were too. We’re happy that he has come back to us again.

That’s good. He was troubled by pain again overnight. I need to increase his pain relief again.

We’ve been keeping his mouth moist, and he has swallowed some coconut water. Is that okay?

That’s okay but make sure that he is fully alert, otherwise, he may choke.

Okay, see this is how we have been giving him the fluid.

Hmm, he is swallowing okay. You can keep going.

Good, we were worried that he was starving. We want to give him more fluids. Could we give him an IV line and glucose?

It’s best to give him fluids by mouth, any IV infusions would still be too much for his body to handle.

They’ll cause uncomfortable swelling?

Yes, that’s right, and it might make his breathing worse. Is there anything else you need?

Could you write a letter to support our relatives coming over?

Yes, I will write the letter after I prescribe the medications.

Thanks doctor.

You’re welcome. Let’s take things one day at a time. Please let us know if you need anything.

Palace of Care – Dehumidifier

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Photo by Laårk Boshoff on Unsplash

We didn’t know what was keeping him going. He hadn’t eaten anything for ten days. No drinks for days. Somehow he was still producing urine. Where did it come from? His son speculated that he was drawing the water out of the room’s atmosphere. “Dad’s become a dehumidifier.”

He had outlived many doctors’ prognostication attempts, including my own. “Anyone else would’ve died a week ago. He’s not anyone else he’s stronger than most people.” Somehow he had stayed alive with his metastatic cancer for four years. He had received multiple treatments over the years. They had kept him alive, but the last three months had been a struggle. He had lost 20kg over the years of illness. 10kg had been lost in the past three months because of severe nausea.

The cancer was cruel as it melted his body away it took away his appetite. His once mighty frame was reduced to skin and bone. He still wasn’t used to his reflection, it had continued to change. Despite all of the weight loss, one thing he never lost was his sense of humour.

In life he had always done things in his way, at his own pace and it was no different in his death. The family maintained their long vigil, and he remained mostly asleep but responsive when he was awake. If our staff found evidence of his imminent death we would inform them. We also warned them that sometimes people don’t want anyone to be around at the point of death and that he might slip away when an opportunity presented itself.

He was kept calm and comfortable. His family were supported and our patient died three days later.

I think therefore I am? – On Death and Dying

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Photo by NOAA on Unsplash

I virtually attended a Palliative Medicine conference over the past three days and have heard talks from a wide range of speakers. Included were a gastroenterologist and a haematologist both from specialties who are still unsure about which patients to refer to palliative care, and when to refer them.

It becomes a self-fulfilling prophecy if all the referrals we get are very late then we cannot do as much for the patients and their families. If the referral only arrives 72 hours before death or two weeks before death, does that mean palliative care is synonymous with end-of-life care? But that is not what we are trying to do in reality. Our services are happy to work alongside other specialties. A patient can be on the liver transplant waiting list and also receive palliative care from the local hospice. This is different to the USA where admission to the hospice programme means you cannot have ‘active’ treatments anymore. We have many patients who are still on their palliative chemotherapy/radiotherapy/immunotherapy and many other active treatments including haemodialysis. Even as the patient undergoes various treatments we are keen to help reduce suffering in its many forms, both physical and emotional, spiritual, and social.

How can we get this important message across? A patient referred to palliative care/hospice doesn’t mean that you have given up on them. One of my mentors Dr David Perez who worked in Medical Oncology would talk to his patients about coming to the point where there were no more active Oncology treatments available and the time had come for Active Palliative Care.

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I think therefore I am? – Colours

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Photo by Sharon Pittaway on Unsplash

Most people have a favourite. Something caught your eye when you were a kid. It might be the colour of your favourite toy. Or your favourite food. It might be the colours of your nation’s flag. Colours are abundant in our world, the different shades make the world more interesting.

People are of different skin colours too. Some of us are white. Some of us are Brown. Black. Yellow, Olive-skinned. Grey. Different but the same in many aspects. Various empires sent their colonists out into the bigger world. The locals were impacted and the trauma that was experienced can be passed down through the generations. A deep lack of trust was ingrained by the actions of colonists toward the natives. This distrust can be passed down the bloodline, leading to intergenerational trauma.

When you are in good health you can tolerate a lot more than when you are unwell. Your baseline fears and needs come to the surface under stress. The uncertainty of their situation can leave a person terrified. The fears from the past can come back, no matter how strong a person had been in suppressing them.

Past traumas can be triggered unintentionally and people may want to avoid situations when they feel at their most vulnerable. People try to remain as independent as possible, and they may struggle in their non-acceptance of help. When you are weak and tired you may try to show your strength by pushing people away. Not being able to toilet or shower oneself may be one such situation. Requiring assistance means the loss of privacy and dignity. Having to be naked in the presence of others is a huge line to cross. Having to admit, “I need help. I am vulnerable.” A nightmare situation for anyone, having to be fully exposed. Add to that the inter-generational fear triggered by someone who resembles your ancestors’ oppressors and pre-existing suffering can be amplified.

Colours can affect us in many ways. Red light means Stop. Green for Go. What does amber/orange mean? Speed up or slow down? Everything becomes a blur of colour. The centre cannot hold, as a human being accelerates towards the finish line. The colour in their eyes faded down to a sparkless stare into space. The light of the person dims as they prepare to leave this plane of existence. Off they go to parts unknown, never to return again.

Palace of Care – A Change of Plans

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Photo by Adam Borkowski on Unsplash

We knew he would die soon and we asked him if he wanted us to contact anyone. He told us he would like his son to know, but he didn’t have his phone number. By this time he was too unwell and needed help with communication via social media. Our nurses helped him to send a message via his accounts. He died before he received any replies.

As per his wishes, we had arranged for a funeral director to uplift his body as he had wanted a simple cremation. He had limited savings and arrangements had been made with social welfare for a funeral grant to pay for his cremation. Our nurses again checked his social media accounts and found a reply from his son, including a phone number. A phone call was made overseas and was answered by the young man’s foster mother. She was told of our patient’s death, and said that his son wanted to come over to see him, and would arrive in town in three days’ time.

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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 – Calm Personified

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Photo by Jared Rice on Unsplash

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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Photo by charlesdeluvio on Unsplash

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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