He didn’t want his wife to be admitted to hospice. She had been ready but he was scared. We had offered admission a few days prior but he had said no. They agreed to come and have a look at our inpatient unit.
On arrival, they realised there was nothing to be scared of and agreed to stay for a symptom control admission. The pain had been worsening and the wife had been reluctant to take any medication as she was worried it might worsen her liver impairment. They liked the safe room we had to offer, and were happy to stay.
Over the next month, our patient only left her room to have investigations or procedures done. We encouraged her to spend at home and we would hold her bed but to no avail. She didn’t think they would cope at home. The thought of leaving our place freaked them out.
Everyone was saddened by her death, none more so than her husband. After we farewelled her, he thanked us and said that if he was dying he would want to die at our place as we had looked after his wife so well.
As doctors, we are trained to make our best attempt at diagnosis and prognostication. We gather as much evidence as we can to support our theories or disprove them. We try our best to get as clear an answer as possible. We pride ourselves on getting things right. We may check things a number of times just to make extra sure as we don’t want to get things wrong if we can help it.
Working in palliative care I don’t mind getting things wrong and sometimes I wish I was wrong more often when it comes to prognostication. The clinical examination findings are considered along with recent blood results. A picture is put together and discussed with the rest of the team. I thought I knew what was going on. The patient and her husband held on to whatever hope they could. Some blood results had improved, and others had worsened. They wanted more investigations and treatments. I thought they had run out of things to have done. They hoped I was wrong. I hoped that I was wrong.
Unfortunately, I was right – The latest scan result came back and showed widespread progression of the disease.
I couldn’t provide them with what they wanted. It felt like every time I went in there I had more bad news to share. They wanted me to say something different. They wanted me to suggest other treatments and other tests. I had nothing new to offer. All the stones had already been turned over. They were willing to take even false hope, but I was an unwilling vendor. I didn’t want to burst their bubble, but I felt like I needed to.
They had tried everything humanly possible to stay alive. They had pushed for tests and treatments and they had managed to keep going for years longer than most people. The more lines of cancer treatments you go through the lower the likelihood of success. They were up to the final line of treatment. Treatment could not be provided without significant side effects occurring. A difficult balancing act. A costly negotiation to take part in. A trade-off had to occur.
If it was all about effort expended they would have lived for many more years. They had tried harder than most people could have. After years of triumph, they were finally faced with their ultimate defeat. They wanted to stay active, to continue doing something. They didn’t want to just wait for death. There was nothing else to be done. The best treatments we had might’ve improved comfort and quality of life, but could not affect the quantity of life. The limit of Western Medicine had been reached.
She said she had prepared herself for death several times over the past few years. She still wanted to try to live for as long as possible but if it was not to be she could accept it. She would try to sleep, try to eat, try to enjoy what she could of this life. Her brain knew what to say. Her emotional heart at times was speechless. She didn’t want to give in to the despair, but at times she wasn’t so strong. At times she wasn’t so sure she could accept things. There was so much she could not do. So many unfulfilled dreams. Too many disappointments.
Recently she felt exhausted, not because of the usual missed meals and poor sleeping attempts, it was much deeper than that. No matter how much sleep she had, she woke up exhausted.
Despite all of the above, she was more worried about her husband and how he would cope.
We tailor the information we give to the needs of the people we are dealing with. Everyone is different. Some will need to know as much as they can. Others will only want to know the bare minimum. Some can only listen to the positive aspects of the information. We try not to extinguish hope, but one thing that is certain in life is death. Sometimes we may have to reframe hope and even miracles. We hope that you will be kept comfortable. It will be a miracle for you to not be in pain or distress. It can be hard for people to stop having tests done. They may have had regular blood tests for many months or years in some cases. Following disease activity markers as if they were fluctuations in share prices, but with much more at stake than money.
Not everyone can accept what is going on. We will try our best to prepare people for impending deterioration and death. We want to try to prevent complicated grief if at all possible. There is no escaping the fact that a person will be dying soon. How long have they got left? We often say we don’t know. We will try to give our best estimate or our best-educated guess. We cannot predict what will happen. We try to anticipate what happens commonly. Each individual situation can be different from what is expected.
We can’t make anyone accept that they or their loved one is dying. The brain might be able to understand and accept what is going on, but the emotional heart takes a lot longer. There will be some people who will never be able to accept what is going on. For these folk, we might need to go into damage-control mode. We wish we had better news to pass on. We can only try to prepare people but sometimes we will not be successful. Some cases will be rough. We must stay calm and all tell the same story.
Our patient who had been more comfortable after we had changed his medications was not as well today. I had heard he had fallen over the weekend. Falls are usually bad news for our patients. The risk of falls increases as people become weaker and more tired. The body is unable to maintain all kinds of balance, not only physical but emotional, spiritual and social. Everything can start to fall apart.
I couldn’t understand what he was saying today. It wasn’t a language issue. He was dozing off as I spoke to him. His replies were slow and they did not make sense. He had some twitching in his arm and leg muscles, suggestive of his analgesia being too high. At times his arms would jerk upwards without any warning. He looked otherwise comfortable.
I wanted to control his pain as quickly as possible thus we increased his doses aggressively. The aim was to control his symptoms earlier, so we could send him home quickly. I had to bring his medication doses down. I hoped this deterioration would be reversible.
I would have to see what happened over the next days..
As if he didn’t have enough problems already two days ago his arm came out in an itchy rash. This made his already poor sleep worse. The itch was still present but was accompanied by severe burning pains. His skin had become too tender to touch. He didn’t dare rub creams onto the affected areas as even gentle touch resulted in worsened pain. He had taken extra pain relief at home but it hadn’t relieved his abdominal or arm pains.
He was admitted into our inpatient unit and medication changes were made. By the next morning, he felt his abdominal pain was slightly better, but his arm itch and pains still woke him up from sleep. A spot diagnosis of Shingles was made, and different medications were charted for pain control.
Our patient thanked us for all of our efforts in helping him and his family. Then he burst into tears. He was still holding out for a miracle but thought that his chances were not good. He wanted to stay alive as his children were still young. He wasn’t all that old himself but he looked at least 20 years older than his chronological age. He had lost more than half of his body weight because of cancer. He had no reserves left. He had a poor appetite and his lack of teeth made eating solid foods difficult. The masses in his abdomen continued to grow and caused him much pain.
The following day he was able to walk around the ward with the assistance of a walking frame. It was good to see him smile.
Our gathered experience and that of other doctors told us that people with her burden of disease would not be expected to still be alive.
When she had been admitted it was thought she might only have days left to live.
She had proven us wrong over and over again in the past weeks.
How was she doing it?
How was she staying alive?
None of us could explain it with our science.
It would be up to experts in other disciplines to explain what was happening. Experts in fields such as survivalism, spirituality, true love, and gamblers who specialised in beating the odds.
It is rare enough for one person to beat the odds once, but for three different women to beat the odds three times, it might’ve been easier to win the lottery.
What did they have in common?
They were loved by their families. They did not want to die. They had life-limiting illnesses which would rob them of time too soon.
They were all mothers, two had children who were on holiday from school, and the other one parented a boy who despite marriage had yet to grow up.
What differences were there?
Two of them had almost died prior to their admission to our inpatient unit.
They all had different pains, the physical aspects which we controlled quickly. If only the non-physical aspects could be controlled as easily.
Two of them had poor appetites but forced themselves to eat. The other one was ravenous but had trouble swallowing.
One of them was too scared to leave her room let alone venture home. The other two enjoyed sunbathing and wanted to spend as much time at home as possible.
Two of them wanted to cling to life for as long as possible. They were willing to do anything to stay alive. The other one had been approved for assisted dying but might or might not go through with it. She just wanted to have the option in case her suffering became intolerable, by her definition.
Two of them held on to hope and celebrated every little victory. The other one had made difficult but practical decisions for the shortened future she had accepted.
One of them had lost her mother many years ago. Another’s mother visited often but disagreed with her use of medications to prolong life. The third mother could not bear to face her daughter’s harsh reality and refused to fly over to meet her.
All three had deteriorated during their admission, making us think they were approaching their end of life. They had all recovered again to some extent, but their overall condition continued to fluctuate wildly.
What was going to happen next?
Impossible to predict, but time would likely declare the outcome for each of the ladies over the next days.
A severe deterioration had been expected within days of their arrival. A review of their medical records pointed towards a poor prognosis. There didn’t seem to be much time left. We tried our best to prepare the patients and their families for imminent death. A few days passed and none of them died. Maybe it was good control of their symptoms. It could’ve been the less stressful environment of the hospice inpatient unit. Was it access to fresh air? The better food? Flexible visiting hours and the ability for family members to stay overnight in relative comfort. Something kept them alive. None of them wanted to die. They all had too much to live for.
Different origin stories. Different walks of life. Different family relationships. Different husbands. Same hospice. Same time. Same staff looking after them.
Deteriorations happened and somehow they recovered. Again and again, they kept beating the odds. Staying alive in a mostly comfortable state. Their loved ones were along for the roller-coaster ride with seatbelts off.
Worsening symptoms required changes to medications. Their worsening overall condition led to discomfort and uncertainty. Was this the start of the final deterioration? Had their bodies decided which path to take? Which destination to go for? How much time was left?
We didn’t know the answers to the questions posed. We had no way of predicting what would happen. Instead, we would monitor their progress over time. Give them time to declare themselves. We would continue caring for them no matter what happened.
He was worried that people couldn’t understand what he needed. His English was limited. Most of our staff’s Chinese was much more limited. Not an uncommon situation. We had previously prepared picture cards for other patients. Simple pictures with words in various languages for symptoms such as pain, breathlessness and nausea. A simple low-tech form of communication. Apps such as Google Translate can help when you are desperate but they are limited. What is required is Google Interpret. Not just the words but interpretation within a cultural context as well. The AIs are not quite there yet, soon come.
In the meantime, we try our best with second languages. A lot of people from China can speak Mandarin which is the government proscribed National Language. Mandarin is often their second language, with the language that their parents used with them at home being their first language.
Mandarin was my first language as a child but once I went to school it was shunted off to the side and English dominated. Many years later I find myself often having to use my now second language, Mandarin, in clinical interactions. Mandarin often is the second language of the person I’m dealing with. We both end up speaking our common second language. It’s not perfect, it’s not 100% fluent for either of us. It does make a difference and is much better than not being able to communicate at all.
The basic human connection. I hear and understand you. You hear and understand me. I can acknowledge your fears and needs. I want to do something about them. We will help you out. We are all here to help you, and to support your family. We’ll get you through this.
palliverse.com 