Palace of Care – Ready To Go

Posted on by
Reply
Photo by Andrew Neel on Unsplash

He didn’t look too bad. He had lost weight from the time I had last seen him which was about six weeks ago. He was a bit slower to answer questions and he looked exhausted, but he didn’t look all that different. The lower leg ulcer looked worse, he had also developed a skin infection in his hip. He made it very clear to me that he did not want the infections to be treated. He did not want to go back into the hospital. He knew that untreated infection could lead to death. That’s what he wanted. He wanted to die as he felt he did not want to continue living after almost ten years of worsening pain. A decade of decreased function, of being unable to do the things he liked. He had been an active grandfather previously but he couldn’t do a lot of the things he loved to do with his grandchildren. Walking was difficult at times and he was worried about how his family were doing as he knew looking after him took a toll on them. He would never consider assisted dying but he wanted assistance from a higher power. He had been praying for his lord to take him.

Continue reading →

Palace of Care – Referred Again

Posted on by
Reply
Photo by Gabriella Clare Marino on Unsplash

When I received the second referral for our man with Chronic Pain I decided to be a bit more careful. Again he didn’t fit within our referral criteria, he didn’t have a life limiting diagnosis which is usually one of the non-negotiables for people under our care. That’s what it looked like on paper, but I will always give a person the benefit of the doubt. We only decline a small number of referrals to our service and most people will have at least one face to face assessment. I decided to see for myself as I knew him better than most people on our team. I arranged for a home visit later in the week.

Continue reading →

Palace of Care – Hot Potato

Posted on by
Reply
Photo by freestocks on Unsplash

Increasing doses of pain relief had not eased his pain. He was becoming confused and sleepy. The decision was made to admit him, there was a lot to sort out. His main caregiver was his wife and she was exhausted. Neither of them had slept for days. His medication list was like a pharmacy textbook and included members of almost every medication category. Many medications had sedating side effects. Polypharmacy – One man, 25 medications. We started to remove as many medications as possible.

We took away one medication per day over the next weeks. If there were no ill effects we would remove the next one, and the next one. His liver enzymes had been working overtime for many years. Medications had been started to treat the side effects of other medications. Older medications which were not working for his condition had been continued for a long time, as he had always been on them. We trimmed his list down as much as we could, removing ten items. We needed to be able to justify every medication that we kept on his list. Slowly but surely he resurfaced. He was able to sleep at night and be awake during the day. At the same time, we worked on his pain.

There were several different pains in various joints of his body. It had started almost ten years ago, and it had taken years for him to be diagnosed with an illness which caused multiple joint pains. The pain was never fully controlled, it became a chronic pain case and he had been referred by his chronic pain specialist for pain control. We searched all of his electronic medical records but could not find a life-limiting illness, he did not fit into our referral criteria. He had terrible pain but was not dying of anything. (I believe that chronic pain doesn’t just shorten quality of life but likely quantity as well.) He had been living with his physical suffering for almost a decade. I suspected that he had suffered from non-physical pain for much longer following a harrowing loss over four decades ago, that he couldn’t talk about. I’m not sure he had ever dealt with his grief, and instead poured himself into the work of helping others. We continued to work on his pain and over the next weeks we had brought it mostly under control.

The pain would still flare up at times but overall was better controlled. His medication list had had dramatic weight loss. We began to make discharge plans. His family told us that his wife had health issues of her own, and they worried about the elderly couple and how well they coped looking after each other. With the family’s input, we made plans to transfer him to a long-term care facility. It had been a successful admission and we discharged him from our unit. As he had no other specialist palliative care needs we discharged him from our service back to the care of the chronic pain team and his general practitioner. The couple showed their appreciation with many hugs as we said goodbye to them.

Palace of Care – Far Too Young

Posted on by
Reply
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 – A Tap on the Window

Posted on by
Reply
Photo by pen_ash on Unsplash

The two brothers of my patient had asked to speak with me. We went to the little visitors lounge which was next door to their brother’s room. They wanted to know what was happening to their brother. They knew he was unwell but they needed to know the extent of his illness as they needed to make plans for the rest of the family.

I recounted the history of their brother’s illness. Worsening cancer had led to worsening pain, which we had only just controlled a week after he had been admitted. The pain had been troubling him for months but he had been too scared to interact with our hospice team. It was only in the past week when the pain had become unbearable that he had agreed to let us help him. I was about to talk about what I had seen, a daily deterioration in their brother’s condition when there was a tap at the window.

Tap, tap, tap. It was a branch from the tree outside hitting the window of the lounge. It was moving because a bird was flying from one part of the branch to another. A small bird with a grey back, light brown belly and white and black tail feathers shaped like a fan – A fantail. The brothers looked at each other through widened eyes, they looked scared. “It’s a fantail. You know what that means.”

Pīwakawaka/Fantail: in Māori mythology a messenger, brings news of death from the gods to the people.

We talked about how I thought their brother was dying. I thought he might only have days left to live and that we would try our best to keep him as comfortable as possible.

I think therefore I am? – Doublespeak

Posted on by
Reply
Photo by Kyle Glenn on Unsplash

Words need to be chosen carefully. We don’t want to cause distress or harm from the things that we say. We have to be mindful of others’ reactions to what we have told them. We need to be clear with the message that we are trying to broadcast. We need to say what we mean and mean what we say. The same is true when it comes to talking about death and dying. People often avoid using those “D” words. Is this because they are trying to protect the listener or themselves? The use of euphemisms can make the message unclear and confusing. Especially if English is a second or third language for people. What terms can you think of to avoid using dying and death?

They are about to pass away. They have passed away. – Overtaking whilst driving?

We are about to lose them. They are lost. – GPS would help?

They are about to leave. They are gone. – On holiday?

Time is running out. Time has run out. – On what? The Boxing Day sale?

Time is short. There is no time left. – On your Netflix subscription?

They are deteriorating. – Standards are dropping?

They are declining. – What an invitation?

They have extreme frailty. – I have extreme confusion.

They are on the edge. They have fallen off the edge of the cliff. – Quick, call a tow truck.

They are running out of fuel. They are empty. It wouldn’t happen with an EV?

They are really, really sick. – That’s why they’re in hospice right?

They are about to go to a better place. They’ve gone to a better place. – Alabama?

They’re stuffed. – Like a fluffy toy?

It’s the end of the line. – The front of the queue?

They’re approaching the finish line. – About to win the race?

And the list goes on and on….Please feel free to add any favourites in the comments.

What I usually say is, “They are dying. They have died.”

I think therefore I am? – Hospice Discharges

Posted on by
Reply
Photo by Katrina Beachy on Unsplash

Discharge from a hospice is a good thing. It doesn’t happen often. Most people die under our care. Occasionally there will be some people who actually stabilise and even improve so much that they no longer require our care. Possibly one of their treatments has worked, and their illness has been controlled. We are not sure how long this stable period will last, but they should make the most of it.

We’re happy to provide our services to those who need them, and we are also happy to step back if our services are no longer required. As I said this is rarely the case. It can be a real bonus for the person to do much better than any of us would’ve imagined. It’s a bonus for us as well to have uncommon success stories. If we discharge you from our service maybe we should hand out a commemorative t-shirt or a baseball cap. “I survived hospice!”

In this line of work, you have to remain open-minded and flexible. Almost anything could happen and you have to be able to go with the flow. Nature can be so fickle at times and what is going to happen can’t be predicted. There is an element of chaos in all of our lives. Some people will have a natural tendency to not be neat and tidy. They might not act as predicted. A chaotic life will lead to a person having a chaotic death as well. People stay true to their nature, even in the end.

30 dying people explain what really matters

Posted on by
Reply

It’s unusual to read an article like this in the media. https://www.theguardian.com/society/2024/jan/27/advice-from-30-people-who-really-started-living-when-they-found-out-they-were-dying

I wonder how I would react to the diagnosis of a life-limiting illness?

I think therefore I am? – Blessing the Room

Posted on by
Reply

I had a conversation with our spiritual care advisor today about blessing the room after a patient has died. It would have to be done in a way that would be respectful of people’s belief systems, even if they have a non-belief. Why are we thinking of doing it? A chance for final closure. A way of saying goodbye. Rituals are important in life and this gives us something that we could do in a meaningful fashion. This is part of what we do after someone has died. We remember the person and their loved ones. We give permission for whatever energies have been left in the room to move on. To clear the room out, ready and waiting to help the next person and their family. A time to farewell a patient and their family whom we might never see again.

We want to do things right, in a first do no harm manner, we don’t want to cause any offence. The blessings are not intended to be from any particular belief system. The staff providing the room blessing need to do so in a compassionate manner. They might have a personal spiritual belief of their own, but in this instance I want them to put that aside briefly, to present as their best professional self a generic blessing that would cover things at a bare minimum. People would be trained to give this blessing to allow the room to be put back into use again quickly. This would allow the cleaners to go in and prepare the room for the next person who will occupy the room.

Letting out the sad, angry energy that might still be there. Allowing the person’s spirit to move to where it needs to go. Spiritually resetting the room to be a blank canvas again. To allow the next person and their family to make their imprint on the room. To clean the silk screen before the next print is made. Is there something missing? Someone missing? A chance to air out the room and freshen it up for the next guests. In an acceptable fashion for all. People need to be empowered to do the right thing.

Palace of Care – Country Roads

Posted on by
Reply
Photo by Devon MacKay on Unsplash

The odds were against him but he wanted to at least try. Even if he died on the way home it would be worth it. As long as he was heading in the direction of his heart. Back to the ancestral home where generations of his family had lived. No matter how far away from there they had gone they still thought of it as home. Even those who had moved overseas many years ago still maintained the connection.

It was the hardest thing he had ever done, but it was the most important thing for him. He left the place he had lived in for most of his adult life to go on his final journey. It would be a long ride in the car. Bumps in the road hurt him the most, and there were many patches of roughness along the way. He held on, he wanted to make it. His family were expecting him and had made preparations. They had organised a bed in one of the rooms. He hadn’t been back for years, life had been too busy.

He felt so tired, he wasn’t sure if there was enough time left. The doctors had told him days ago that there were only days left. He was so tired. He would only let himself rest for a short time. He had to be awake to will himself to his destination. He tried to keep his eyes open, but his eyelids felt too heavy, he just couldn’t keep them up.

He woke with a start. A large truck had been going in the opposite direction and the vibrations from its wake had shaken their small car. They were on a country road, there were no lights around them, and the road was deserted. They drove alongside a stream, that’s where they used to go eeling when they were kids. Around the corner, they turned and he saw a dim light in the distance. They headed up the gravel driveway, and he saw her in the doorway.

The light from the house reflected in the two wet tracks down her cheeks, “Welcome home son.”