Palace of Care – Intertwined

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Photo by Dan Meyers on Unsplash

I went to visit a famous man in his home. He was well-known locally and internationally. He had achieved great things throughout his life. The last few years were difficult for him due to several illnesses. One bad thing added to another, added to another. A painful condition had developed at the site of a previous radiation treatment. It caused nerve irritation resulting in electricity-like surges of pain even at rest. If you’ve ever knocked your funny bone you’d understand the feeling of nerve pain, but this was much worse. The pain relief he was on didn’t work, and he didn’t want to try anything else. He hadn’t slept for most of the week. His wife hadn’t slept either as she was trying her best to look after him. The hospice nurse had talked to them about admission, but he was reluctant.

I joined the nurse on the home visit, and we were welcomed in by his wife. We went inside and there was a huge pet cat inside, the size of a medium-sized dog. I noted the chairlift as we went upstairs to his bedroom. He had been stuck in bed for weeks as his legs had become weak due to nerve issues. He had developed several skin pressure ulcers. He looked exhausted, he winced in pain. He was constipated and full of frustration. He looked broken and it didn’t take too much to convince him that he needed to be admitted. He needed a general sort-out, especially of his pain. I promised him we would keep him in the inpatient unit for as short a time as possible, and that we would send him home if things improved.

We worked on his pain aggressively and brought it under control fast. His constipation proved to be more stubborn. His skin pressure ulcers responded well to our nursing team’s attention. He hadn’t spent much time apart from his wife and he worried about her when she wasn’t around. He thought she did too much for him and he wanted her to take a break. At the same time, he thought he would miss her too much. They had been together through many hardships and many successes, the highs and lows of a busy intertwined life. Everything had become a struggle in recent weeks because of the loss of mobility. How long could they continue together at home? Would they have to live separately?

Palace of Care – Where There’s a Will

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Willpower can be like a superpower for some people. Through sheer force of will they can make themselves stand up from their deathbed and walk to the toilet. I’ve witnessed people hold on until the arrival of overseas relatives. People who I can’t explain through physiology how they could still be possibly alive two weeks after they had any oral intake of food or fluid. What hidden reserves do they draw upon to sustain themselves? I don’t know, I can’t explain it with science. There is still much we do not know.

Let the force be with you. Well, it certainly is with some of my patients. The sheer force of determination. Or is it love? Or faith? People can hold on to life despite the worst of circumstances. Viktor E. Frankl and others could survive concentration camps because they had something to continue living for. What if you do not want to live any longer? What if life is full of pain and has become unbearable? What if you spent your whole life in control but have lost control at the end of your life?

I’ve seen many former professional people who had spent their careers in charge of people, struggle when they have lost control. They included school principals, charge nurses, managing directors, coaches and military leaders. They had guided their staff through difficult situations but had trouble guiding themselves through their final situation. The existential distress of dying caused them much suffering. Some of them would’ve requested an assisted death if it had been available to them. Some people will try their hardest to die and may wake up disappointed each morning they survive.

I’ve watched feeling powerless as people put as much effort as possible into dying naturally. They willed themselves to stop living and expended many hours in distress when it didn’t work. As in the rest of their lives when they wanted to achieve something they had pushed as hard as they could. Striving with the full force of their will to grab onto something that would take them away. Losing their last shreds of patience and sometimes shaking their faith, they kept trying harder and harder, beyond exhaustion.

Until.
They.
Finally.
Let.
Go.

Other people, like my patient from Europe, could let themselves go. They may have said their goodbyes to the people they needed to. They might have had one last family reunion or spent one last night with their loved ones. They did what they needed to, finished their business, and then relaxed and let themselves drift away. To sleep perchance to dream.

Palace of Care – Alien State

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He had always been active. Busy at work, busy at home. He and his brother had emigrated from Europe over 50 years ago. They came to seek a new life in New Zealand. They both married local women and raised families. Both of them had remained active in their elderly years, especially our patient. He spent a lot of time in his garden when he wasn’t playing soccer with his grandchildren. He did not handle being sick well.

The constant fatigue troubled him the most. Not being able to do what he loved. It was as if the weeds could tell they were safer with him less active. They quickly took over the garden. His lawn had dandelions growing in it for the first time, they usually did not survive long enough to flower. The lawn was where he would play soccer with the grandkids. He wasn’t able to play any more and the ball would’ve been slowed down by the wild chaotic weeds. He could not get used to his new situation – inactivity.

He hated being unable to do what he wanted. Being forced to sit down after the shortest of walks made him feel useless. The indignity of having to be pushed around in a wheelchair was the worst. He thought everyone was staring at the old man in the wheelchair. Old and frail was how he felt, words he thought would never be associated with him. He didn’t want to live if he couldn’t be independent. Back in Europe, he would not have to go through this torment. If he was a citizen there he could request assisted dying, but New Zealand’s law change was still many years away.

The hospice staff had given him more bad news. They thought he was too frail to live at home. It was recommended that he be admitted into residential care. Away from his wife and his house. Living with a whole bunch of elderly strangers to him meant a severe loss of privacy. It would also cost a lot of his hard-earned money. All the sacrifices he had made to save money, buy his house, raise his children, and spoil his grandchildren. Cheese and onion sandwiches for lunch every day at work for forty years. He could not take it any longer. He had always been what he called determined, and what his wife and brother called stubborn. He knew what he had to do before things got even worse. His family would understand. Eventually.

Palace of Care – Nothing is certain

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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…

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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

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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.

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Palace of Care – Palliative Care Travel Agency

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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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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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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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