They’d been unwell with cancer for months and it had led to them becoming bed-bound. Their children had tried to look after them to the best of their abilities. The pain had worsened recently and they’d felt more and more fatigued. The family was not coping well and needed help. When admission to hospice was suggested the family had considered it over a few days before agreeing to it.
On arrival, the patient was in pain but was able to make themselves understood easily. Pain relief was provided with good effect. A family member was rostered to be available all day and all night long. Just in case our patient needed anything overnight.
On review the next morning, the patient needed several extra pain relief doses. We incorporated the extra doses into the syringe driver which was running continuously. We talked to the patient’s son about what was happening. We talked about how worried we were, that she might continue to deteriorate further and that we did not want there to be any surprises.
The next morning and our patient’s pain was controlled but they were no longer speaking clearly. It was difficult to understand their speech, and for them to understand our speech. A marked difference compared to yesterday. More family members had come to visit and we spoke to the eldest son. We brought him up to date with what was happening to his parent. Our patient was dying and possibly had days left to live.
Our patient had a moist cough and was troubled by worsened dyspnoea. We explained that we would not recommend antibiotic treatment if there was a chest infection, given the end-stage cancer our patient was troubled by. We needed to make some changes to their medication mixture. The son appreciated what we were doing, and was going to let the rest of the family know what was going to happen. No surprises.
Her brain had no trouble accepting what was happening but her emotional heart took longer. The love of her life for over 45 years of marriage was dying. The doctors had warned that he might become confused and agitated as his condition deteriorated. He was comfortable and the pain relief had taken a few days to optimise. He was more relaxed and then deteriorated. He became less lucid as we neared the end of the week.
A clash of cultures became evident thanks to some of the visiting friends of the family. “You have to ask your doctors if they will give infusions to your husband. In China, he would be having lots of intravenous fluids, and other treatments such as tube feeding.”
We had to explain that artificial hydration would be too much for the dying person to handle, and would worsen skin swelling and likely worsen his breathing. We did not want to add to his already heavy burden of symptoms. His wife indicated she understood our rationale. We explained he could die at any time.
Intellectually his family could accept the ongoing bad news, but when it came to emotions it would take much more time. Their loved one was dying and all they wanted to do was to help but didn’t know how to. Mouth care was a task that we delegated to them. Our counsellor was asked to talk to the family.
Their brains understood the words we shared, but their emotional hearts couldn’t understand the language and operated on feelings instead.
He was far from home, many kilometres away from his tribal lands. He had come to the big city for cancer treatments and to be closer to the few family members who lived close to our catchment area. The treatments had not worked despite everyone’s best efforts. His condition deteriorated at an increasing pace. The Oncologists thought he was dying, that he only had days left to live and they arranged for him to be transferred to the hospice for symptom control and likely end-of-life care.
We managed to calm down his physical pain and nausea with urgency. When he was more comfortable his appetite improved. Everything was going well, we started making arrangements for where he would go next. Along with his family, he had chosen a hospital-level care facility that would be easy for his out-of-town family to visit.
On the day of his planned transfer, without warning, he collapsed and died. Death inside a hospice is not an unusual event. For Maori folk, after death, the usual preference is for the body to be embalmed and then for it to lie in state at a family home for a few days. Then it will make its final journey to the mana whenua/tribal homeland for burial.
Our patient and his family were all from out of town. They did not have a place of their own they could use to host a small funeral. They asked if it would be okay for his embalmed body to return to hospice for them to hold a tangihana/funeral.
We discussed it as a team and said “Sure, let us know if we can help.”
His family were grateful to be able to farewell him together in their traditional way.
In all my years of working in hospice, there have been more than four weddings on-site, but this was the first funeral.
His sister and nieces pushed him in via wheelchair. His skin was a yellowish grey colour. According to his family it had been a huge change from when he had arrived in town last week. Then he had been well and was able to dance with his nieces. Now he couldn’t walk without assistance as he was too weak and fatigued.
He’d been diagnosed with end-stage cancer only months ago, and arrangements had been made for him to go into residential care. As he deteriorated, his elder sister and her daughters wanted to look after him. They picked him up from his residential care facility and moved him into his elder sister’s house in Auckland.
Over the course of his first week with his family he became more unwell. Nerve related pain from his cancer worsened and led to his hospice admission. His medications were adjusted to make him more comfortable. The family arranged for a reunion. His elder sister came down to see him.
All he wanted to do was sleep. He had no appetite.
He enjoyed the family reunion, it had been years since he and his siblings had been in the same room together.
On his final day he became comatose. His older brothers came to see him in the morning, after travelling two hours by car. They talked about when they had all been young. I explained that he was critically unwell and could die at anytime.
His sisters came back to see him, and within minutes he had taken his final breath.
They were a big Samoan family who supported their mother’s decision to not undergo dialysis for her kidneys. She had no appetite for her favourite foods and the level of care was entering into an unknown realm. In the distant past the caregiver had done some volunteer work for Hospice and thought this might be the answer to the problem.
A family meeting was called and Hospice intervention was discussed. The siblings were unanimous in their decision. No Hospice, they viewed it as a betrayal and a failure on their part that their mother would be under the care of strangers instead of within her own family. The siblings were having difficulty accepting the stage that their mother was at.
Christmas came and she was very ill, she tried to make an effort to enjoy the day for her children. Her grandchildren carried her outside into the Marquee for Christmas dinner.
She didn’t want to spoil the day for her children. They took her back to bed after a couple of hours. She was too exhausted to sit up any longer.
Two days later she was in hospital, unable to communicate. She sat and stared into space. In the morning she woke up and pleaded to go home.
Without consulting anyone her caregiver made the decision to request palliative care through Hospice. By the time the discharge from hospital was completed, the hospital bed had already been delivered to her home. Pain relief had been organised to ensure there was no breakthrough pain.
The family had been standing alone with care of their mother and initially viewed Hospice as a “us or them” situation. The siblings quickly realised it was more of a “we are on the same team” situation with a wonderful wrap around service.
The experienced nurses provided kind compassionate loving care. The family wanted the best care for their mother and thanks to Hospice they got it.
My consultant asked the young man, “What would you like us to call you?”
He answered, “Your highness.”
“Okay your highness, how have you been?”
That was an entertaining start to the therapeutic relationship which put everyone at ease, and allowed for an air of playfulness to come into the clinical encounter. The patient was in his late thirties and had come into hospital with severe pain. It was likely due to cancer metastases, and he was still recovering from his last cycle of chemotherapy when we visited him.
He talked about what was most important to him, spending time with his young son. This was whilst he was carefully mixing flax seed oil into a serving of yoghurt, as part of a cancer treatment diet that he was trying. He would try anything to keep himself going and wanted to spend as much time with his son as possible.
Despite all the treatments that he had received the cancer continued to progress causing ever more problems. The side-effects of the aggressive treatment were severe and included the loss of his hair. He said that he had always had good hair, and it was one of his personal trademarks since he was a teenager. Now he didn’t mind losing his hair, and he had even designed a t-shirt for the sake of entertaining himself and those who looked after him.
He loosened his dressing gown and revealed his creation. In bold font it simply said, “Hair by Chemo.”
I gently knocked on the door and then poked my head around the corner. I paused briefly before walking in and saw him sitting there holding his wife’s hand. He bent down and talked gently into her ear. They had only been married for 62 years, and had been together as a couple much longer. She had looked after him well according to his daughter, he had always been treated like a king. In recent years Dementia had meant that he had needed more care than ever. His queen kept him in line but as her health deteriorated she could not keep up with him.
She had lived with her daughter, son-in-law and had practically raised their children. The grandchildren were emotionally close to her and had spent six to eight weeks with her over the Christmas break before heading back to their overseas-based lives. Since her cancer diagnosis seven months ago, she had been cared for by her youngest daughter. She had to keep a close eye on her husband, as he was a flight risk. At times he didn’t even recognise her as she had recently lost a lot of weight. He would ask, “Who is the nice old lady?” With a few prompts he could be reorientated to the love of his life.
I was asked by medical students, what was my favourite part of working in Palliative Care? I instantly replied, having a laugh with my patients and their families. Even though a person may be dying, they hold on strong to their sense of humour as it still feels good to laugh. To see the lighter side of even your own end of life is something that I have seen often. People still want to feel included in life and still want to have some fun. To be treated like a normal human being. My favourite thing after 22 years of medical practice is having a good laugh with my patients.
Last Friday, we had a great time joking around, whilst getting to know each other better. Pain and nausea had settled after a few days of hospice work. It was good to meet him properly for the first time, with his quick wit in full flight. I had trouble keeping up with him, a quip every other minute, followed by puns. Two proponents of Dad Jokes performing sit-down comedy, both riffing off each other’s comments, and enormously enjoying each other’s company. Each the perfect audience for the other. Our companions in the room were briefly forgotten, but we didn’t want them to feel lonely and started including them in our fun making. My team mates were included and then my comedy partner’s family. There were no taboo subjects as we launched into our roast of our room-mates.
Pearls are formed by oysters when they try to wall off something that irritates them. The irritant gets covered in layers of a substance called nacre (mother/parent of pearl) and can become something beautiful of high value. This process is explained well here.
Some patients are truly a pleasure to look after. Some will find their way through your protective shell and into your heart. I was granted permission to broadcast the following story by Perlin Soong and his parents as he hoped that it would help others in similar situations.
I’d heard about Perlin months before I actually met him. He was described as a remarkable 32 year old man who had advanced metastatic cancer. He’d received many treatments and had come close to dying a number of times in the past year. His oncologist arranged for me to meet Perlin in hospice outpatient clinic as he had questions to ask about the end of his life, which he was likely approaching.
Perlin attended clinic with his parents, having recently completed whole brain radiotherapy for brain metastases. At the time he felt relatively well but knew that things could worsen at any time. Thus he tried to make the most of each day, e.g. He had recently fine-dined at one of Auckland’s best restaurants with a fellow foodie friend – had bivalves been on the menu?
Perlin had been distressed by severe headaches, nerve-related leg pains, breathlessness and panic attacks. We explained that we could usually control such symptoms well and on the rare occasions that we couldn’t, Palliative Sedation therapy could be offered. This final resort therapy would make him less aware of his symptoms, and usually out of the hundreds of cases that we dealt with each year, only two or three of them required sedation. This conversation reassured Perlin.
Perlin recounted having being surprised that a work colleague became his chemotherapy buddy, as they were both being treated at the same time for advanced cancers. He talked sadly about how his friend had deteriorated rapidly and that his death had been upsetting, but had spurred Perlin into completing his own Advance Care Plan (ACP.) Perlin’s preference of places to die were, in descending order; at home if possible, hospice and hospital only if it couldn’t be avoided. As long as he could be kept comfortable without too much distress for his parents he would be “okay.”
Perlin worried about having seizures or stroke-like events. His mother had been affected by a previous stroke, and required care provided by his father. Perlin was worried that his father would not cope with caring for him and his mother at home. If this happened Perlin would consider residential care placement.
My impression was that Perlin had accepted his situation in a brave and pragmatic manner, and he was trying his best to look after his parents. Perlin talked about having organized as much as he could in order to make things as simple as possible for his parents, this included his advance care plan, his will, and a fully-paid highly detailed funeral plan complete with Spotify playlists to play.
Over the next two months Perlin was able to stay at home as he gradually deteriorated. His condition worsened leading to a fall, that led to a hospital admission which resulted in transfer into our inpatient unit for further symptom control and discharge planning.
Physically a lot had changed since we had last seen Perlin, he needed a lot of assistance and was largely bed bound. Cognitively he was still intact and he greeted me by name in his usual friendly manner. He had been troubled by pain and agreed to us changing his medications to make him more comfortable.
Two days later, we had a long talk about his worsening situation due to continued rapid progression of his cancer. This was despite steroid treatment, which would only have a temporary effect. Perlin noticed that cognitively he was not as lucid as he was at the time of admission. It was agreed between us, Perlin and his parents that further increases in steroid would not occur.
Perlin said that he did not have any regrets, and that he would be okay with dying, if it was his time, but that he wanted to make the most of his current quality of life. We clarified with Perlin what his idea of quality of life was; he wanted to not be in pain, didn’t mind being sleepy and in bed or his La-Z-Boy chair, wanted to be able to enjoy the company of his parents, watching movies, eating food, and listening to music. We decided with Perlin that if he was unable to enjoy the above or if he was suffering from uncontrolled pain, then withdrawal of steroids would be appropriate.
Perlin made it clear that he was uninterested in being maintained in a state of limbo, i.e. kept on high dose steroids whilst not having quality of life. We confirmed with Perlin and his parents his ACP wishes. He talked about not wanting to receive futile treatments and being kept alive in a vegetative state. He said, “I don’t want to end up like Michael Schumacher, I don’t want to end up like that.”
Perlin talked about his Race4Life wishes: He had been on a helicopter ride, and a meeting with PM Jacinda Ardern had been arranged for that week but due to NZ’s second COVID-19 Lockdown, Ms Ardern was understandably busy in Wellington. Instead, Perlin wrote a personal note to Ms Ardern who replied back a few days later with a handwritten note and a signed photograph, which please Perlin and his proud parents.
Perlin expressed how glad he was to have completed his ACP already and having arranged for a lot of other things while still relatively well. Perlin said it was important for him to share his story as he thought it could help to encourage other people to make plans early. He was glad that he had done so months ago, as he was too unwell to do so now, which would have caused much distress for him and his parents.
We asked if he needed help with anything else? “No, I’ve sorted almost everything out, except…” Perlin talked about having worked through his movie bucket list and his unsuccessful search for two movies, Run Lola Run, and Tango (1999.) That afternoon I emailed our hospice staff and within hours we had managed to find online access for both of the movies.
In the following week Perlin deteriorated and naturally became more sleepy and less lucid, as previously agreed steroids were reduced whilst medications were adjusted to keep Perlin comfortable.
Perlin was deeply asleep as we discussed the ongoing and rapid deterioration in his condition over the past days – Perlin was dying. His Dad talked about Perlin’s life and how he had always meticulously planned everything. He said that Perlin had already arranged personalised gifts for friends and family. For example, Perlin had arranged a dental appointment for Dad to have his teeth sorted, as well as nice clothing for his mum, who would never spend such money on herself. He had pre-written emails to the teams that had been treating him, that were to be sent out in the event of his death. He had also given Dad instructions on what to upload to Facebook when he died. I spoke to Perlin and said that we would get him through this, and that we would keep a close eye on his parents too. I was surprised when he answered back, “Thank you, thank you.”
Perlin was kept comfortable as he continued to deteriorate, and our care focus shifted to also supporting his parents through their most difficult time. Days later Perlin died peacefully in their deeply loving presence.Perlin had been a good friend, a trusted colleague, a Crossfit enthusiast, a world explorer, a brave man who looked after many. His life was not long, but he had packed so much into it. He touched a lot of people during his time, even experienced hospice staff sniffed back some tears as he was dying.
Perlin had talked about tough topics with grace. ACP can be a scary and uncomfortable concept to get to grips with, but it can be so helpful for peace of mind and to decrease family stress. It was truly a pleasure to be involved with Perlin and his family’s care, and to bear witness to the love and respect that they showed towards each other. Perlin was a fine reflection of his parent’s loving care and parenting skills. Anyone would be proud to have a son like him.
Goodbye Perlin, and thank you for having made the world a better place with your presence.
“The last few years have taught me that when it is our time to leave this world no one can stop it. We have one life to live. The material things we invest in are left behind only to be discarded. Live life to the fullest, don’t waste it and do what you want to do.” – Perlin Soong