He’s been telling me off, he’s never done that to me before in all of our time together. He was grumpy and demanding. He wanted to get up and wanted me to lift him up. I can’t do that I’d hurt my back, he’s too heavy. I’m worried he’s going to fall over. He just won’t listen to reason.
Yes, I’ve noticed a big change. He was joking with us just the other day, now I can’t connect with him at all. I want you to know that he is talking strangely and it is out of his control. I don’t want you to take what he says to heart. It’s the illness talking not him.
Is it the medication change from yesterday?
I don’t think so. I think it probably is his cancer getting worse and making his liver fail. We’ll change his medication to see if it will make a difference, but it might not improve his condition.
A doctor friend told us that when people get closer to dying they become confused. Is that what is happening?
Yes, your friend is correct, that is something we see in our patients as they get closer to dying.
How long do you think he has left? Weeks?
I think he might at most have weeks. With the changes we’ve seen so far I would guess he only had days to weeks left to live. Things can change much faster as we approach the finishing line. He might have much less time than weeks left.
Our older son is taking me to the funeral director to make arrangements. My younger son is coming over but I’m not sure if he can handle looking after Dad. I’ve asked a nurse friend to come over to support my son.
That’s a good idea. I’m going to change your husband’s medications now, to see if we can get him thinking more clearly. His thinking may or may not clear up, no matter what happens.
I received the news by email that a brave young lady had died overnight. Before opening the email I knew what it meant. Opening the missive confirmed the bad news. I still gasped a jagged breath in when I read the words. Even after 16 years of full-time palliative care some cases affect me more than others. A good reminder that I am still human. I still feel sad about some cases. I can’t feel too sad though or I wouldn’t be able to carry on. I need to be strong enough to handle the next cases that will come my way. I can’t fall apart after each loss. I allow myself to grieve a bit for each death. I obtain closure. Things would have been much worse if I hadn’t been involved. I have made a difference. I have done enough.
The care I provide can never be perfect. If it was a perfect world my patient would not be dead, they would be alive and living the rest of their lives. Her life was cut far too short, she barely had time to become an adult. I’m not sure if a good death was achieved, but I know that it was much less bad than it could’ve been. There will be tears, even I feel myself blinking some back. Bloody hayfever. Could you go and cut those onions somewhere else please?
I informed my team of the death through our online chat group. I also let them know that I feel sad, that the most experienced member of the team feels sad about this case. That it is okay to feel sad. We’re humans, we know something about loss, it’s okay to feel our emotions. It’s okay to do some extra self-care when we need it.
The other day she wore a vintage Spice Girls t-shirt. I had asked her, “tell me what you want, what you really really want?” We had laughed together and talked about her toys. Her vintage Care Bear, her pillow pal, her Squishmallow. There were no Beanie Babies, yet.
Her room is across the corridor from my office, the big family room in our inpatient unit. I keep my door open to allow the air conditioning in on hot summer days like today. The temperature is not high compared to a lot of areas but the humidity level makes everything feel much hotter. I am sensitive to sound and noise which is why I usually keep my door closed as I become easily distracted. From the room opposite to mine many waves have vibrated through the airspace between us leading to electrical stimulation of some of my nerves and registering as different activities.
I have heard laughter at least 20 times. There has been a constant hubbub of active conversation in the background, I cannot discern what words or even what language is being used but I can tell from the tone how connected the people in the room are. I have heard the cries of a little baby. There are toddlers talking to their uncles, aunties and grandparents. Older cousins are hanging out with each other during an unexpected day away from school. Was that guitar I heard just before? I haven’t heard them sing yet, but I am sure they will at some stage. I have heard new visitors being greeted enthusiastically, the sound of people hugging with many kisses to cheeks. A lot of people have brought food.
I am the most distracted in the hour before lunchtime. Over the last two years of intermittent fasting, 11 am is one hour before I break my fast. From my neighbour’s room I can hear and sometimes smell people sharing food with each other. A shared family meal can be a difficult logistical exercise in the adult life of New Zealanders. Where to meet, how to meet, when to meet, what kind of food to bring? All of these questions require answers and solid plans in order to make things happen. From my position it sounds like my neighbours are having a good time. The warmth in the room is not just the ambient temperature but it represents the shared feelings of love. The people have gathered because their loved one has needed them.
My patient is dying and there is nothing we can do to stop it. We have tried over the past week. We stopped medications that were no longer helping. We hoped her deterioration was due to medication side effect but it wasn’t. Was it a reactive depression to the bad news she received two weeks ago? We started her on a fast-acting antidepressant but it made no difference. Last week I said hello but she didn’t answer me. The dullness in her eyes told me everything . Time would be short. She was not going to make it home ever again, her family would have to bring a bit of home into her hospice room. I can hear upbeat music being played in the language of her family’s place of origin. Now it’s Josh Groban’s You Raised Me Up. “I am strong, when I am on your shoulders…”
Even after working 16 years full-time in palliative care the stark contrast still hits me. My patient is dying in her room but she is surrounded by so much life. Her little baby, who is vocalising a lot, is in there with a lot of the people who will be bringing her up after her mother dies. Another tragic case but life will go on, another case where we have made a difference.
I couldn’t fall asleep, I can’t remember the first part of the night. Then I had pain, they gave me pain relief and it helped. Then I slept for a few hours.
My staff told me you had trouble swallowing your medications.
Yeah, it took a while but I was able to take my morning pain medication. It was good they changed the other medications to liquids.
I don’t want you to end up in pain if you can’t swallow your medications. I’m going to switch your medications to injections so you’ll be able to get all your medications without needing to swallow them.
Okay.
Have you had nausea?
I did but it was okay after the medication they gave me.
My team said that you wanted to talk about assisted dying. Do you want to talk about it with me?
Yes, please.
I need to tell you what your situation is. Do you want to know how much time I think you have left?
Please tell me everything.
I’m worried about you. I think things are changing fast. If changes occur over months, a person might have months left to live. If changes occur over weeks, they might only have weeks left to live. I’m worried because changes have been occurring over the last few days, which makes me think you might only have days to short weeks left to live.
Oh?
I don’t think you have enough time to go through the assisted dying assessment process which usually takes at least a week or two. I don’t want to waste your precious time doing something that isn’t going to help you.
Thank you.
Do you have any questions you want to ask me?
No, you’ve covered it all well.
Okay, I’m going to change your medications now. Hopefully, you’ll be more comfortable soon, before your kids come in. I’ll see you later.
Our patient was reviewed by the surgeon in our inpatient unit. It was kind of the doctor to see him at our hospice. Our patient and his wife were able to discuss everything with the surgeon and he left them to think about the proposed operation. They talked about this with a number of our staff and then discussed it with me. We went through all the possible benefits and risks and we decided together that they would like to try the operation.
The operation would involve removing a specific part of the spinal cord in order to disrupt the nerve pain from being transmitted.
The operation went as planned and our patient recovered well from it.
We were expecting him to come back to our inpatient unit for a period of rehabilitation but he was good enough to go directly home.
The operation had successfully controlled his nerve pain, and we could reduce his medications a lot.
He was well enough to go to his holiday home for some weeks in the summer, something he had thought he’d never be able to do again.
Physically his pain was well controlled but the non-physical aspects of his pain remained. The existential and emotional distress were not improved at all, in fact they might have worsened. A common side effect of the pain relief medications he had used was drowsiness. Now that he didn’t need as much physical pain medication he was less sleepy, and had more time to think. More time to think about the grimness of his reality.
Unfortunately our proud patient had refused all input from mental health services or counselling. The idea of talking to people about his feelings was an alien concept for this self-described working class man. He just couldn’t discuss these things with anyone, it was a step that would always be too far for him to ever take.
I was called by the staff of the local hospice which covered the area where his holiday house was. They had been asked to call me for my opinion on what they should do in regards to further treatments of life-threatening infection. Knowing the man as well as I did, I didn’t think further treatments would be helpful. He was miserable and staying alive longer to be more miserable would not help him and would only prolong his suffering.
Psychologically he continued to shut down and withdrew from the world. He died at home after being well looked after by his devoted wife with the assistance of our visiting staff members.
After a week with us things had settled down. Pain was better controlled with more effective medications. His skin was well on its way to healing. Our patient had become bored, and had been watching more online streamed content to pass his days. A joint decision was made between our patient, his wife and our staff. He would be discharged home with extra home supports arranged. His wife was confident that she would be able to handle things at home. Our community hospice nursing team would restart his home visits. Over the next weeks small adjustments were required for his medications otherwise everything else was controlled.
Two months later and the nerve pain which had shot down his legs, intensified. Side effects of his medications became a problem at higher doses. We needed to try something different. He was re-admitted to our inpatient unit for symptom control. We increased his doses with only mild pain reduction but a marked increase in side effects. He lost his lucidity, drifting in and out of sense. This distressed him more than the pain did. For someone who had prided himself on his intellect, losing access to it even briefly was one of the worst of his fears made real. To be unclear in his thinking was torturous, what he was most afraid of. Not being able to understand or communicate he felt trapped in the prison of his body.
We had to come up with something different. We consulted our colleagues across the region including pain specialists and neurosurgeons. An operation was proposed, and preparations were made. No guarantee of success. We felt almost as nervous as he and his wife did but we had to do something.
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.
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.
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.
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.
palliverse.com 