“I can’t handle this suffering anymore I’ve had enough.”
“Okay. I think I can make you more comfortable. Then you will probably be more relaxed and may fall asleep.”
“You’d rather be more comfortable and sleepy than fully alert but in pain?”
“Yes. The doctors in the hospital had asked if I wanted CPR. There is no point bringing me back just so I can suffer more. I said no.”
“I’ll record in our notes that you aren’t for CPR. If you were to have a life threatening infection I would not recommend you to have it treated.
“No treatment of infection please.”
“If you have any important things to do or people to see I’d recommend you do it as soon as possible. I can’t predict what will happen tomorrow let alone next week. I don’t want you to miss out on the opportunities to connect with whomever you want to. I’d rather you do so too early, than too late.”
“Thank you doctor.”
“I think it’s time that you talked to your children about what is likely to happen . Our counsellor can give you some advice as to what to say.”
“Okay, thanks doctor.”
“Remember you need to push the call button if you are in pain. Doing so will help us when it comes to prescribing the right doses of medication.”
“Thanks Doctor. Could I get some pain relief now.”
He was admitted because of uncontrolled nausea and vomiting. We thought it might be a malignant bowel obstruction but his bowel sounds were normal. He would vomit at least three times a day. Strangely the vomiting didn’t seem to bother him, in fact at times he and his wife seemed happy after he vomited. We weren’t sure of what was causing his nausea and vomiting, his blood tests showed evidence of dehydration, but there was nothing obviously reversible going on to explain his symptoms. He looked unwell and after a few days on our ward he appeared more gaunt. Our attempts at controlling his symptoms were not working, we hadn’t solved the mystery yet, until we noticed the half-filled blue glass bottle on his table. “Keep out of direct sunlight.”
End-stage COPD (chronic obstructive pulmonary disease) due to lung damage from smoking had been his problem for the past decade. Lung tissue destroyed by toxic exposure leading to severe shortness of breath. He needed oxygen at all times, and could only at best mobilise short distances. Life had become a struggle, and just when he thought things couldn’t worsen, they did.
He was in really bad shape when he came in on Friday, he was only semi-conscious and could not respond to my questions. His wife and son, who were his main caregivers at home, looked exhausted. He looked terrible, blue lips and tongue, breathing rapidly, short, shallow breaths, with only a small amount of chest movement. I had not seen him so unwell before, which really concerned me.
Using all my clinical skills and experience, I really thought that he was dying, that he would die within the next hours. That he might last only days, and might never fully wake up again. I gently conveyed this news to the family. That I thought this might be the end of his life. They took it well, he had been unwell a long time, and had been close to death many times in the past.
I prepared his medication chart for end of life care. I wanted to cover the five common symptoms that occur at the end of life; pain, breathlessness, nausea, agitation/confusion, respiratory secretions. Anticipatory prescribing for a dying person is done, in order to cover the things that occur commonly during their last hours to days of life. Aiming for comfort more than anything else, we started him on syringe driver medications. This would mean a continuous infusion of symptom control medications to keep him calm and comfortable for whatever time was left. I left that Friday afternoon truly thinking that I would not see my patient alive when I returned after the weekend.
I opened the curtains this morning and there was a little fly. These have become ubiquitous in the past weeks as we have entered New Zealand’s summer. This fly was doing it’s thing near my bedroom windows and despite still being bleary eyed I tried to catch it with my bare hands. Using my whole hand did not work, the fly was able to weave it’s way between my fingers. After a few flailed attempts, I decided to change my strategy. I would try and catch it between the index finger and thumb of my preferred right hand. I went to grab it, and made contact. The fly was stunned and landed on the window sill, I promptly threw it out the window. Little did I know that this series of events would lead to a communications breakthrough later in the morning.
There was a tension in the room as we walked in. The patient was having suctioning done, but from the sounds of her breathing the fluid that needed to be cleared was deep in her main airways. As people near the end of their lives they are less able to cough, and so a tiny amount of fluid can pool, and these can result in a rattley sounds produced on breathing out. Just like when you are drinking something through a straw, at the end of a drink, a tiny bit of fluid can make a lot noise. The same occurs at the end of a life, a bit of fluid vibrating in a deep airway can be noisy, it probably doesn’t bother the patient so much but can be a source of distress to their family members, and even clinical staff.
The adult children, all of whom were parents themselves, were attentive but all looked scared with deep concern etched on their faces. Their beloved mother had been well up until only three weeks ago. Then a large brain bleed had come out of nowhere, rendering mother unconscious. Off to hospital, with many invasive procedures completed but no significant improvement obtained. The doctors and nurses had tried everything they could, but the patient remained unresponsive.
The family were told that their mother/grandmother was dying, but it took a while to sink in. It is usually hard enough to visit sick loved ones in the hospital, let alone during strict Covid-19 lockdown conditions. A very distressing time for the patient and her family. Their mother who had brought them up well, who was the beloved grandmother to their collected 7 children, was not going to be alive much longer. They hated to see her in such extreme distress, and were trying to help, but really did not know what to do.
Communication was crucial but to begin with the emotional temperature in the room was icy cold. An icebreaker was required as it was difficult to establish any rapport with the patient’s children. The patient herself had not been able to speak or respond for some weeks. Even using our mutual second-language, Mandarin Chinese, I had trouble connecting with the distressed family.
Something must have noticed and sent along a little helper, through the window. A fly was flitting around the patient and we tried to swot it away, but it was persistently dodging all attempts. I readied my special index finger and thumb technique that had served me well this morning, I was primed and ready to strike when the air in the room was disturbed by a whooshing sound.
By the time of his admission he’d been on the steroids for six months, to counter swelling caused by brain metastases. His wife had stopped nursing at the GP practice in order to care for him.
He had been deteriorating in recent weeks and could no longer be reasoned with.
We couldn’t talk to him, he just stared at us blankly when we asked him questions, his wife had to answer for him.
She described him sitting on the bed eating mandarins spitting the seeds out onto the carpet. She said that he would be horrified if he knew what he had been doing, as he was the tidiest person she knew and he had always been house proud.
The worst thing that had happened was after he had urinated on the bedroom floor having mistaken it for the toilet. He then slipped on his own urine and fell to the floor, luckily he did not hurt himself badly.
I asked if he had any seizures. She said that at times she had seen his arm going rigid, and then he seemed to be even less responsive. She had thought of seizures, but there was no jerking. She had mentioned it to the Oncologists but they had not looked into it any further.
I was intrigued by this. Could it be non-convulsive status epilepticus – repeated ongoing seizures without convulsions leading to decreased consciousness? His wife agreed to a trial of anti-seizure medication. If the medication didn’t make any difference we would stop it.
He was well respected and had many visitors. He had sponsored most of his family to come over to New Zealand. He had enabled his brothers and parents to come over in order for them to have a better life. He was the reason that the children’s generation grew up speaking English and Chinese. He ran his businesses successfully with the help of his siblings.
It was unfortunate that he became unwell with cancer, but he was well-supported by his family. He had always been there for them so when he was unwell they were there for him. He was able to purchase the best care that money could buy, and his Private Oncologist tried everything that was available, but it did not work.
He went back to China in order to access other treatments but they did not work either and meant that he had to spend time away form his family which he did not like. Family was the most important thing to him in the world. That was the whole reason that he had worked so hard in order to make things better for his family, so that they could enjoy their time together.
He started to deteriorate more quickly and he was admitted for symptom control but ended up requiring end of life care. There was always a family member present. When he started having trouble swallowing, the family asked about tube feeding. We knew that back in China if you could afford to pay for it you could access almost any treatment you wanted. It was explained that we did not think that artificial feeding and hydration would be beneficial. He became sleepier and less clear in his thinking. Eventually he became comatose.
His family continued their vigil, even though he was unresponsive. They asked how long he had left, and we couldn’t give them a adequate answer. They rightfully pointed out to us that he had not had anything to eat or drink food about two weeks. How could he keep on staying alive? I had trouble explaining it with all of my medical training, our science could not explain what was going on.
In her short videos she explains things that we commonly see in end of life care.
Julie McFadden’s engaging videos have gone viral. Awesome!
How else could social media help us in terms of palliative care promotion?
How can we use these platforms for good?
How can we extend our reach further?
Who else can we help to extend their reach?
How can we help our friends and colleagues in other less developed places provide palliative care better?
Many of us around the world, myself included, did not feel at all prepared by health care school curricula which continue to lack palliative care education.
Personally, in my spare time, I am working on a freely downloadable “Dummies Guide to Palliative Care” book aimed at newbie health care practitioners. Contents to include: Did you know there are five main symptoms when people are dying? Here’s how to identify them, and treat them…
Please let me know if you are keen to contribute, as doing it by myself might take longer than if I had some helpers.
I don’t feel well. I’m having trouble breathing. I feel so tired, but all I do is sleep. I’m feeling too weak to walk to the toilet, I almost fell over last night.
The nurses told me that you’ve had bad pain, but that you didn’t want to take pain relief.
I need to finish sorting out my legal affairs, I don’t want to leave too much for my friend to have to deal with.
Our social worker can help you with that stuff, she can talk to your friend. What else is bothering you? You look worried.
Doctor, I think I don’t have much time left, I feel so terrible, I don’t even have energy to talk to my sisters back home. Why do I feel so bad?
You’re getting worse, it’s the cancer, your body can’t handle it anymore. I think you are dying, and you might only have days left to live.
I thought so, I just need to sort my stuff out…
Then you’d be able to let go?
Yes, I don’t think I can hold on for much longer.
I think I can make you more comfortable, putting up with pain will use up your energy even faster, and make you more tired. Can I increase your pain relief a bit? It might make you less tired.
Okay, if you think it will help.
We’re going to get you through this, and even if you fall asleep we will continue to try to make you comfortable. We’re going to get you through this. This is our social worker, she can help you with your stuff.
Thank you doctor.
Please let us know if there is anything else we can help you with. I’ll see you later.
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