Tag Archives: dying

Palace of Care – Nothing is certain

Posted on by
Reply
Photo by Suzi Kim on Unsplash

Our worst suspicions were confirmed by the virtual clinic appointment. The bad news that we had expected had eventuated. No further treatments were available because of progressive disease. The news caused her to shut down and to shut down our attempts at communication. She became quiet and wanted to sleep more. She seemed to be distancing herself from the world. She didn’t want to see her baby. It was as if she had given up on life.

How long she had left to live was uncertain. We thought it could be as short as weeks, but it could be much shorter or longer depending on her frame of mind. Had all her hope been taken away? As cancer grows the problems it causes usually worsen. Pain increases, energy decreases, and fear can balloon. What was the right thing to do? To encourage her to live whatever life she had left? We thought she still had things to live for, especially her baby. What did she think? For some patients dying as soon as possible may spare them from too much suffering.

We needed to check with her what she wanted. We needed to find a way to ask her, but first, we needed to re-establish our connection with her. She asked for us all not to come in and we respected her wish. She allowed us to talk to her family as she did not want to break the bad news to them herself. We would try to talk to her more during the weekend when there would be much fewer staff members around.

Palace of Care – If the walls had ears…

Posted on by
Reply
Photo by Karsten Winegeart on Unsplash

I felt like for the first time in ages that I got my husband back last night. He wanted to take control of the remote.

We watched part of a movie together and he was able to enjoy it.

For the past two months he hasn’t been able to do much, and hasn’t felt like doing anything.

Last night it was like he had come back.

The pain I have got at the moment is nothing compared to what I have been putting up with in the last weeks.

I haven’t been to sleep for weeks, the pain keeps waking me up.

Last night I did wake up during the night but I was able to get back to sleep again. My wife didn’t even know I had woken up.

The pain is still there but it’s less than it was.

I’d like to get up to go for a walk later, maybe get some sunshine.

Zero is no pain at all, ten is the worst pain you’ve ever felt. How would you rate your pain now? I want you to ask for some pain relief if the pain level is 3 out of 10. If you let the pain get up to a 7, then it will take longer and will take more medications to control it. I want you to hit the pain when it is still low, we want your pain to be as close to zero as possible. Please let us know if you need anything, I don’t like my hospice patients putting up with pain, it drains your precious energy away. Let’s try and free up your energy for other things. Please let the medications do their job for you.

Has anyone told you that you look like someone?

Yeah, I’ve been getting that all the time. I used to explain to people that I’m not who they think I am, but they would never believe me.  Now I just play along with them and it can lead to interesting conversations about all sorts of political policies.

I think therefore I am? – Grief and Loss

Posted on by
Reply
Photo by Dorrell Tibbs on Unsplash

In a conversation with a grief counselling provider the other week we talked about the grief process not just occurring after a person has died but occurring during their final illness. The person themselves will grieve over the losses they experience as they become sicker. The parts of their self that die as worsening health takes its toll on a person and their loved ones. This may include loss of the many roles that people have in life. A big one is the loss of employment, not being able to work can affect people deeply, especially if work plays a big part in who they are or represents why they are. Not being able to contribute to society can be a huge loss and a damaging blow to a person’s sense of wholeness.

Loss of roles in a family can have a huge impact. If the main carer becomes unwell it can put a great strain on the other family members. Who can be called in to help with Grandma, now that Mum is unwell? The other members of the household might need to learn how to cook and clean amongst family tasks that seemed to be taken care of as if by magic. The clothes don’t jump into the laundry basket by themselves. They pour themselves into the washing machine with just the right amount of washing powder and water. The teleporter doesn’t work any more, the smelly socks that are thrown at the laundry basket go for a swim in the washing machine. Then they grow legs and somehow jump onto the washing line to work on their tan. Once all traces of liquid have been removed the items of clothing practice yoga, contorting themselves into origami configurations all the better to line drawers with. This whole process may become much less reliable when a family member is unable to help out with house hold chores.

Continue reading →

Palace of Care – Nudge

Posted on by
Reply
Photo by Dimitry B on Unsplash

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.

Continue reading →

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?

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.”