Category Archives: Clinical

Palace of Care – Palliative Care Travel Agency

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Photo by Kelli McClintock on Unsplash

Practicality

We often complain about what we don’t have here in New Zealand regarding our health services while taking for granted what we do have. Our South Pacific Island neighbours have much less than we have and access to medications is limited. Strong pain relief for severe pain is hard to find and people may die in pain and with other uncomfortable symptoms. This all needs to be taken into consideration if you are discharging someone who is returning to their home overseas.

What medications will our patients take away with them? There may barely be access to oral opioids in their home country, don’t even think about subcutaneous injections. Syringe drivers cannot be continued. What can you switch the injectable medications for? Transdermal patches can replace the pain relief component. Consider medications that can be given sublingually (for absorption by the mucosa under the tongue). Anti-nausea agents, anti-distress medications, and pain relief can be given in this way. Up to a month’s worth of medication can be prescribed and prepared the day before the flight by the dispensing pharmacy.

At the usual airline cruising altitude of 30,000 feet oxygen availability is reduced by almost 30%. Oxygen may need to be available. To lessen the need for toileting during the flight consider giving enemas the night before. Indwelling urinary catheters could be inserted to take care of peeing. Provide medications that will be needed on the flight such as pain relief, nausea relief, and distress relief.

Reality

Once the hospice team had decided on a plan everyone sprang into action on the Friday afternoon. The Pacific Cultural Liaison met with the patient and family. One-way air tickets were booked for travel in two days. Blood tests were taken and the results would be back by Saturday morning. The rest of the family prepared their travel plans too. A mixture of excitement and fear were the main emotions shared. Would she be able to make it home?

Saturday morning she was cleared for discharge home to local family. A chance to say goodbye to her loved ones before Sunday. Many tears and hugs were shared as people realised it would be the last time they would ever see her.

Tearful goodbyes at the airport. Onto the plane and a nervous four-hour flight. Exhausted but unable to sleep. Focused and determined to make it home after being away for the two hardest months of her life. Thinking of all the people she needed to see. What’s going to happen to the kids? Touchdown and it took the longest time to get through customs. The bumpy ride home and everyone that meant something to her was waiting there to welcome her.

An afternoon and evening full of goodbyes, there was laughter amongst the tears as memories of good times together were shared. It was hardest for her parents and their siblings to handle. Daughters/nieces are not supposed to die before you do. Exhausted but fulfilled she fell asleep in her own bed, with her family all around her. She had never been so tired before but she had made it home.

At 9 o’clock the next morning a brave and determined lady’s breathing slowed down until there were pauses of up to ten seconds. The pauses eventually grew longer and longer until she finally stopped breathing.

Kia ora everyone, there will be a break from usual transmission for the next ten days as I take a holiday and have a digital detox, see you back on 28/02/24.

Palace of Care – I want to try

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Photo by Robyn Louise on Unsplash

How was your walk around the garden?

It was good, nice to be in the sun again, I couldn’t do that at the hospital. I got a bit puffed and had to stop a few times, but I’m okay.

Any pain anywhere?

No, not at the moment. There was before but the medication helped.

Please tell us if you are uncomfortable, we don’t want you to put up with pain or anything else making you uncomfortable.

Okay, I’m good at the moment.

Did you tell the doctors in the hospital that you wanted to go back home to the Islands?

Yes.

What did they say?

They weren’t too keen. They said that I probably wouldn’t make it because of the illness.

What do you think?

I really want to go home. I came here to have treatments, but there are no treatments left. I want to go home and see everyone else.

I think that you still have a chance to go back, but we have to act on it fast, as things can change fast at any time. We’re going to check your blood tests and see what needs to be done. We want you as comfortable as we can get you. You might still not make it.

I want to at least try to go. If I can’t go then I’ll stay, but I want to try.

Okay, we’re aiming to get you back home. We’ll look at your medications and arrange for stuff that you can take with you. We’re going to ask our other team members to help you make plans to travel as soon as possible. If it works out, great, if not at least we have tried.

Thanks, doctor.

Okay we’re going to try to make it happen, see you later.

Palace of Care – An officer and a gentle man

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Photo by Alexander Andrews on Unsplash

The young man looked smart in his military uniform as he strode through the hospice corridors.

He’d come straight over from the defense force base to join the rest of the family, the traffic had seemed slower than ever.

His superior officers had been most understanding, they knew how important it was for him to be there in his family’s time of need.

Grand-Dad had always been there for him, at times he had been more like a Dad.

He would miss Grand-Dad but all the good memories would live on in the stories that the family shared. So many funny stories.

Grand-Dad had helped so many people throughout his life. That’s why the young man had joined the armed forces, to do his bit in helping people.

He gently stroked Grand-Dad’s face as he spoke to him, as tears brimmed in his eyes.

A mixture of emotions roiled on his face. Sad that Grand-Dad had died, but relieved that he didn’t have to suffer any more.

I love you Grand-Dad. Thank you for everything. Don’t you worry, we’ll look after Grand-Ma and each other.

Palace of Care – Nudge

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The physical and emotional roller-coaster ride continued for our patient and their family. Close to death one week, then an incomplete recovery. No longer imminently dying, but far from sustainably living. A plateau in the journey, like being stuck in transit with no clear plan of when the next part of the trip would continue. He still wanted to start his journey up to heaven, but his flight had not been called yet. He improved a bit more to the point that he was slightly better than when he first arrived. This was disappointing for him as he felt he was heading in the direction opposite to where he wanted to go. He maintained his faith and stayed calm. His Lego showcase continued to fill the room. Extra shelf space had to be organized. He was worried that he was taking up a bed that could be utilised by someone with greater needs than him.

Nothing changes when nothing changes. Sometimes a small nudge is required for situations to change. We decided to start discharge planning again as he was holding his own. We didn’t want to make him anxious as we had with the previous discharge plan so we talked to his family about it and not to him. He continued to do well, more Lego assembling occurred over the next weeks while his family found him a suitable place. He remained active around our ward, walking around slowly between Lego sessions. A new skin infection appeared but it wasn’t too painful for him. We had promised him again that we would not start any antibiotics and we stuck to our word.

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Palace of Care – Ready To Go

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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.

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Palace of Care – Referred Again

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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.

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Palace of Care – Hot Potato

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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

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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

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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

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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.”