Yeah, and in the bottle is seawater from the beach. He spent a lot of time on that beach and in that water during his life.
Wow, I’m getting goosebumps just hearing about it. Oh hello, Aunty, how are you?
I’m good. Just let me play him something on my phone.
Oh, what are you playing?
Sounds of waves hitting a beach.
From his favourite beach?
No, but most beaches sound pretty similar, right?
Oh right. That’s a really nice thing to do.
The beach and water are where he is heading. He’s going to see his Uncle and they will go sailing together again.
Just like when he was a kid.
Yeah, that’s when his lifelong love of sailing began. He told us today that he’s ready to go. Do you think he will die today?
He might do, but that’s what I said six days ago. I’m not sure, he’s stronger than most humans. But he may have finally let go. No matter what happens we will keep him comfortable.
There’s usually one person in the family who is the go-to person when it comes to anything to do with death and dying. They are the one that everyone else relies upon when times get tough. They are the one who is called when a life is at risk. They are the one that everyone else counts on to get them through tough situations. They are there to liaise with the medical teams. They will drop everything to attend to the needs of the unwell person, even if it means their own needs do not get attended to for some time. They are the one who copes on behalf of everyone else. They will translate the bad news into more acceptable language.
They didn’t get a choice in these matters. Everyone else just turns towards them. They end up being a key conduit of information, from the family to the healthcare team. They will also relay information from the healthcare team to the rest of the family. The bad news may be broken to them in the first instance and they will broadcast the message in a way that their family will understand.
It’s difficult being that person. You are so busy taking care of everyone else, that you don’t leave much in the tank for yourself. You keep on doing your assigned roles. Someone has to do it. When everyone else is busy grieving and crying, someone has to call the Funeral Director. Someone has to organise the service, the funeral booklets, what songs to play, and what speeches are to be presented. No time to grieve when there is so much to do. That can wait until everyone else is taken care of.
Generations of his family came together to join the bedside vigil. Grandchildren who were out of town came home to see the beloved ol’ fella. His cheeky smile was still there to greet them all but with each day his energy levels decreased. He needed to sleep more. His appetite dropped off steadily.
They knew time was short. At the start of the admission, over a week ago, they had been told there might only be days left. Dad kept on proving them wrong. He would still rouse to their voices but had become too weak to talk.
The son came in every day and saw his father melting away. Intellectually he was prepared for the loss of a parent. The scenario had played out in his mind ever since the diagnosis was confirmed. The emotional organs always took much longer to catch up with the thoughts.
How much longer could he go on? He had always been strong, but nobody expected him to still be alive. The hospice staff were just as surprised.
“I’m not sure how long he’s got left. If it was anyone else they probably would’ve died last week. I’m not even going to try to guess. He is getting closer, his breathing is changing, and he has become more agitated. It could be hours to days, but that’s what I told you two days ago. He’s going to do things at his own pace, in his own way, just like he always has.”
The son was on the other side of town when the call came through. He raced back in his powerful car as fast as he could, but he was too late. A lifetime of memories washed over him as tears tracked down his cheeks. He had to put his grief on hold as his assigned role in the family took precedence. Someone had to find a funeral director, organize the memorial service and look after everyone else. Again. He took a deep breath in, sighed, and started making phone calls.
It had been almost two months since the treatments had stopped. It was the right thing to do as the treatments could not be given in a safe manner. It was deemed too dangerous to continue, thus they were finished. The blood test results were all highlighted in the abnormal hue of red. The organs had stopped working long ago, the treatment had been trying to replace the organ function. It had worked until other more important organs started to dysfunction. The family was informed of this change, his son knew exactly what this would mean. Time was going to be short, no one could say exactly how short, but he expected his father would die soon.
Almost two months later and Dad was still doing okay. He had continued to live his life the way he wanted to, as always on his own terms. He had worked almost twenty years longer than most people would have. A physical job that exhausted men decades younger than him, but one he had done until less than two years ago. He’d beaten the odds once again. How long could he go on like this? In the past few days, it seemed like life had caught up with Dad. It was subtle to start with, with more fatigue than usual, and a smaller appetite. At times Dad didn’t know where he was, but he could soon be reorientated. Then he almost fell over a few times. It was more of a slow-motion slide to the ground. Gravity had seemed to slow down around him, and he slid joint by joint to the floor. Although he had lost a lot of weight he was too heavy for his partner to lift off the floor. This had started happening more and more times. A call for help was made, and a team came to see him at home.
I was told that apart from the near falls, the nurse couldn’t find anything else needing attention. They thought he might only have weeks left to live. They recommended that he go into residential care as he would be harder to look after as he became more unwell. I had a different opinion. I had seen this play out too many times before. When people start falling it is a sign that the end is drawing closer. I thought further deteriorations were about to occur, that there would soon be a crisis. I arranged an admission into our inpatient unit.
On arrival, he was still pretty good. Able to walk in and converse with our staff. There was no discomfort, he was relaxed and happy. He and his partner settled in quickly. Over the weekend the family arrived and spent time with him. His son was glad that Dad had been admitted, and that the family’s distress had been relieved. The doctors said they’d see what happened over the next few days.
Two days later and Dad needed help to get out of bed. His arms and legs had lost their strength overnight. A further deterioration on top of those that had occurred already. Dad was starting to slip off the edge of the cliff. If he continued to descend at that rate, he might only have days left to live. The son came in again to have an important conversation with him. To find out what he knew about his condition.
“It’s pretty shit. I don’t have much time left.”
“Is there anything you still need to do, to sort out?”
“No. I’d like to see my siblings and our family.”
“Okay Dad, I’ll make some arrangements.”
A steady stream of visitors came over the course of the next week. Every day his son would check in with him. Every day Dad looked a tad smaller. His happy smile was still there but he became less able to follow conversations. Every day he slipped a bit more cognitively.
A steady stream of visitors came over the course of the next week. Every day his son would check in with him. Every day Dad looked a tad smaller. His happy smile was still there but he became less able to follow conversations. Every day he slipped a bit more cognitively.
I always say that people can hear us even if they are in a coma. I believe they can hear us even when they appear to be dying. The family in the room wanted him to hold on. His son was on his way from overseas. Due to arrive that evening. I’m not sure how long it had been since they had seen each other. Likely it had been a while as COVID flight restrictions had meant that many families had been separated for much longer than usual. He wanted to see his son. His son was already on the plane somewhere over the Pacific Ocean. Thousands of miles away, 33000 feet up in the air. Everyone was willing the plane to arrive faster.
I wasn’t sure if the son would make it in time to see his father. My patient was in his bed, not able to respond to any of the voices in the room. I counted the pauses in his breathing. 10 seconds, 11 seconds, 12 seconds, Gassssp. The longer the pauses the closer a person is to dying. My best-educated guess was that he only had hours left to live. I knew that his son was still at least seven hours distance away. I didn’t want to scare them but they needed to know of my concerns. No surprises.
“I’m not sure if your Dad can hold on for much longer, I think he might only have hours to go before he dies. He might not be able to see your brother. He will try and hold on for as long as he can, but his body is too weak. He knows that his son is on the way to see him, and he’ll try his very best, but he might not be able to keep on going for so long. There’s nothing I can do to keep him alive. It’s up to a higher power than us humans.”
I spent the next seven hours attending to work tasks. Seeing other patients. Discussing other patients. Writing emails to organize things for patients. Phone calls related to patients. I wondered if my patient would be able to hold on for much longer. I knew he would be trying his best, but he had no reserves left. The cancer had taken away his precious energy. It was removing both quantity and quality of life. It was beyond the control of sheer willpower, no matter how strong the person was. I couldn’t extend his life, no one in the world could, no matter how much money they had. They wouldn’t be able to buy him extra lifetime. I could try to make him more comfortable. I would try to reduce the pain that had been gnawing at his leg for so long. I would try to calm the distress revealed by his furrowed brow. To ease the worries of his gathered family members. I would try my best to make him more comfortable. To look after his family. That’s what I could do. To give him the best chance of seeing his son, or at least to be seen by him again.
I’m very worried about your father, I think he only has a short amount of time left.
The doctor yesterday said he might only have one to two weeks left to live.
That would have been right yesterday, but your father’s condition got worse overnight. He had a lot of pain, agitation and distress. I am worried that he might die possibly within hours to days.
Dying? You think he is dying?
Yes. You’ve noticed his breathing becomes faster, then it slows right down, and then there are gaps in his breathing. This is what we see when people are dying.
Is there anything that you can do to keep him alive? His son is on his way from overseas, he’ll be here by this evening. Can you give him food or fluids?
He’s unable to swallow anything. If we fed him it would make him choke. The safest way to give him fluids is to keep his mouth moist.
Could you put in a line, and give him fluids and nutrition?
We don’t do that as his body is too unwell to cope with food or fluids. Extra fluids could lead to painful swellings, or worsen his breathing. His body wouldn’t be able to digest food even if we put a tube through his nose, down his throat and into his stomach. He wouldn’t be able to digest the food. This might cause vomiting, and could lead to diarrhoea. We don’t want to make his tough situation even worse.
How about Oxygen? Could that help his breathing?
I’m not sure. We can check his oxygen saturation level. If it is low he might get some benefit from having oxygen.
Is there anything else you can do to keep him alive?
We are at the limit of what humans can do, it is now up to higher powers than us. We can make him comfortable though.
Will it help us to wake him up when he is sleeping?
Probably not, he is too unwell. He knows his son is flying over. He will try to hang on. I’m worried that they might not be able to see each other again.
He can hear and understand what you are saying. He will try to respond to you but he probably won’t be able to. We want to look after him well and get him and you all through this.
Thank you, doctor.
You’re welcome. Please take care and rest when you can.
Today I was asked the difference between the terms Palliative Care and End of Life Care. End-of-life care is for the last days of life and can be considered the final kind of palliative care that people will receive. Whereas palliative care is for people in their last 12 months of life or possibly longer. A person may have palliative care needs at any time during this period. They might have symptom control issues needing assistance. Common physical issues are pain, nausea, breathlessness, and agitation but non-physical issues can cause just as much if not more morbidity.
Using the lens of Aotearoa New Zealand’s Te Whare Tapa Wha as well as Tinana/Physical we look at Hinengaro/Emotional, Wairua/Spiritual, and Whanau/Familial/Social. People may be suffering from problems on the non-physical sides of the house.
What is palliative care? Care is provided to patients in order to decrease suffering. To calm down symptoms affecting the whole person be they physical or non-physical. It is hard to divide people up into the four sides of the house as everything is interlinked within the same person. You can’t separate the mind from the body from the spirit from the community.
Fear of the unknown is what can occur when it comes to Hospice. People may have a certain idea of what hospice is. It might be a frightening thought for them, one they hope they will never have need of. Death is inevitable and reminds us that it will come to us no matter what station in life we have held in the past. What we do in the here and now is what is most important. Will there be a tomorrow at all? We don’t have all of the answers at all.
People in the communities we serve don’t know us well. Fear of the unknown is a real thing, that hampers access to care. How to break those through the fear barrier? Knowledge is power, empowerment to make your own decisions. To do what is right for you and your loved ones. While you are still well enough to make decisions we will check with you about what you would want to happen or not want to happen to yourself.
I often joke about my increased use of gut instinct over the last ten years as my gut has gotten bigger. The truth is I have been using more intuition. Sometimes ideas just feel right. I need to tune into the person that I am assessing. I need to use empathy to try and discover what makes them tick. What drives them? What is important to them? What keeps them going despite insurmountable odds? Who are they? What goals do they still have, even at the end of their life?
The practice of mindfulness meditation has helped me to answer some of the questions. It has helped me in trying to obtain a ‘read’ of the people I am interacting with. It allows me to meet them as they want to be met. On their terms, using language and concepts they can understand. I will listen to you. I will be guided by you. I am here to help, in a way that you want to be helped. I am here to learn from you because you are the expert when it comes to yourself, not me.
I know my place. I am not your boss. I am not your parent. I may be friendly but I am not your friend. I need to maintain my professional distance in order to remain objective in the care I provide. I need to be able to connect with you in order for us to understand and work with each other. We will come up with a bespoke plan together. Any decisions made will be shared between us. A true therapeutic partnership is what I am trying to grow between us. It will take work on both sides in order to make it happen.
I promise you that I will try my best to do right by you. I wish I could do more. Together we can work together to try to improve your quality of life. I will try to look after you as a whole person. You are so much more than just a physical body. There is a story about you and I am here to hear you tell your story. I will listen actively and allow you to talk without interruption. I’ll be your guide for what may be your final journey.
How would it feel to be told that you are going to die?
That you will not be able to leave the ICU.
That you will not be able to leave the hospital.
That you will never be able to return home.
You receive a call saying that you will die from your illness within three months.
You believe them and prepare for death. You organise your own funeral and your burial plot.
You finally accept your situation, that you are dying.
Then it doesn’t happen.
Again and again and again.
What do you do now?
You’ve beaten the odds over and over. By many weeks, months, and years.
You don’t know what to believe any more. You don’t know who to believe any more.
It could all be taken away at any time. Do you dare to dream? Do you dare to hope?
Somehow through all the disasters you carry on, something keeps you going. Some inner strength. Some kind of fire keeps on burning inside. Some light that refuses to dim. A strong spirit coupled with too much to live for. A fervent wish to meet the next generation. To be part of their life. To grab onto whatever precious bonus periods that life may have to offer.
palliverse.com 