Tag Archives: family

Palace of Care – Mystery to Solve

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I was in my office and I heard the sound of people crying including children. I wasn’t sure which direction it came from, was it in front of me or behind me? The young mother or the older mother? Or was it the grandmother? Three ladies who were all dying in our hospice, had all outlived their prognoses. Prognostication is our best attempt at an educated guess, we are often wrong. That was the case with our three ladies, they were holding on, doing things in their own time. Who had just died?

Listening more closely, there seemed to be many different cries. This ruled out the grandmother who did not have a large family. The other two families were larger. Was it the mother of two or the mother of five? Both patients and their families had spent the last months in and out of our hospice inpatient unit. Both families had initially resisted coming into hospice due to fear of the unknown. After spending weeks with us both families had also been nervous and reluctant about taking their loved one home. They had become scared of leaving a place where they felt safe. Both ladies had successfully made it back home and had spent long periods at home.

When each lady returned it had been in similar circumstances, a deterioration in overall condition, with confusion and agitation prominent. Husbands were stressed out, as they had to take over the running of their homes. Their wives had previously run their households, now the husbands had to take over and they found the job to be harder than going to work. So much to do in so little time, dropping off the kids at their schools and picking them up afterwards. Household chores wouldn’t take care of themselves. They wanted to give it a go before evaluating the need for home support.

I was still unsure, I would have to venture out of my office to get more information.

Palace of Care – Guidance

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“This will be a challenge,” was my first impression when I first met the son. His eyes were on the brim of tears, his gritted teeth, I could see he was having a hard time. Our staff had told me that our patient, the mother, had deteriorated steadily during her short admission. Ongoing changes over days meant at the most only days left to live. The staff had also told me that the family were keen on our patient having further treatment for her cancer. They had been trying to feed her more as they believed that if she ate more she would be able to fight her cancer more. She had come in because of worsening nausea and appetite. They were so intent on her getting treatment, that there was a huge mismatch between their goals and our patient’s reality.

As I walked into the room and saw our patient for the first time I thought she looked terrible. Like she she could die at any time. There was a lot of distress in the room. The husband was crying disconsolately while holding her hands. The children and their spouses witnessed this in distress. The gathered grandchildren amplified the distress of the two elder generations. The room went quiet as I examined our patient. Weak thready pulse, hands and feet becoming cooler to touch. She didn’t respond to my voice or when I examined her. Her ragged, wet-sounding breaths were made louder by the intense silence of the room. It was as if everyone was holding their breath, myself included. I finished my examination and took my time coming to a diagnosis. I asked if I could sit down on the spare bed before I addressed the whole family.

“I’m worried about your mother. I think she is getting worse. I think her time is getting shorter, and she doesn’t have long to live.” Tears and sobbing around the room. Nodding indicated surprisingly dawning acceptance. “I know that you wanted your mother to have more treatments. I think if she had chemotherapy it would not make things better, but would make her feel worse, and might shorten her time even more.” “I’m sorry, I wish we could do more for her. The best we can do is to keep her comfortable, to calm down her distress.

They handled the bad news well, “please keep her comfortable.”

I was asked by a colleague why the family couldn’t let her go and wanted her to keep on going with treatments. I replied, “It’s because they love her so much. They just don’t want to lose her. Up until two months ago, she had been well, and then she wasn’t. Now she’s dying.”

The counsellor stayed behind to support the family. She arranged for the husband to have some private time with his wife. He said to her, “I’m going to be okay, I will be looked after by our children and grandchildren. I love you. Do what you need to my dear.”

She died 60 minutes later.

Palace of Care – Noisy Neighbour

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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.

Palace of Care – Operational Success?

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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.

Palace of Care – Desperation

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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.

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 – 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.

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.