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.
We never met the social butterfly of the workplace who made an effort to make everyone feel welcome and included. The young lady who made everyone at work laugh. The person who befriended everyone and even their partners.
Life can be too unfair for some people. A room full of flowers, teddy bears and heartfelt messages. The love in the room was palpable. The care they provided to our patient and to each other was beautiful.
We only met her when she was critically unwell. When the illness and medication side effects had made it too hard for her to be fully herself. In so much pain that she couldn’t do the things she wanted to. Her body too distressed, making everything a struggle. Moving around the room became exhausting for her.
By the time she came to stay with us the talented artist was too fatigued to produce any artwork. The music fan with no favourite genre lacked energy to listen to her favourite songs. Not enough breath to sing along with.
Cancer can be a cruel illness that takes too much away. Potential snuffed out with too much finality. Opportunities taken away much too early. She never had a chance to grow old. She never had a chance to explore the world. Taken away in her prime, she has missed out on too much.
Some cases are just so much sadder than others. We have to look after ourselves just that little bit more. We have to be proactive in looking out for each other even more. The team looks after people well but we need to look after each other as well.
We can hardly imagine what it feels like for the parents to lose their daughter. For the siblings to lose a sister. For the grandparents to lose a grandchild. We try to understand but we don’t really know what it feels like. Taken away too soon. Our patient died and a butterfly was affixed to the door of her room.
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.
In the approach to the finish line, there is an acceleration. Bad things start happening faster and faster. One physiological insult after another. The body just can’t keep up with the relentless series of assaults. Nature is trying to take someone out. Symptoms that are already present worsen. New symptoms develop and cause more suffering. There is only so much a person can take, no matter how strong a fighter they are. The mind and spirit may still be strong, but the flesh has become weak.
The family urge them to hang on. They are trying their best but there is little to hold on with. They are slipping away from our world. They are dying and there is nothing humans can do to stop it from happening. It is up to higher powers now, it is out of our hands. We can make people more comfortable but we can’t save every life. There’s just too much going on, too much going wrong.
I’m worried that time has become really short. There might only be hours to short days left to live. I’m worried they are suffering, that they are really struggling. We want to make them as comfortable as possible. Medication changes could make them more comfortable. The main side effect is sleepiness. At this stage of things, even if we took away all of the medications they would still be sleepy but would be very distressed. If they are distressed this will make you all distressed.
I’m sorry this is happening. I need you to know what is happening and what is going to happen. I can’t let there be any surprises between us. Yes, please talk amongst yourselves. I’m happy to come back later to discuss this further. I just want you to know that we are looking out for their best interests and that their comfort is our top priority. We’re going to get them through this, we’re going to get you all through this. Please let us know if you need anything.
Life can be full of uncertainty and the same is true for dying. When will it occur? The doctors don’t really know, they can only give their best guess. The ones who give an exact time are likely out of their depth and answer with false confidence. Three weeks. Three days. Three hours. Medical science is not that exact yet. Maybe someday there will be a test that will tell people exactly how long they have left to live. Not available yet.
Sometimes people will say their goodbyes too soon. They carefully choose their words as it might be the last time they ever see each other again. Could it be the final farewell? Yes, it could be. We’d better say what we really need to say just in case it is the last chance we ever get. A final chance to connect with a loved one. A final chance to heal or to hurt. A final chance to say what a person means to you. A chance to wish them all the best for the future you won’t be a part of. A final chance to share one last rendition of a long-standing private joke. One last hug. At least you had a chance to see them before it was too late. Not everyone makes it in time, which has been particularly painful in these COVID-affected years. So close, but yet so far. So much suffering.
Why do we leave things unsaid until we know a person is dying? Could we have told them the truth earlier when we were both fit and healthy? All of us who live will at some stage die. It could happen to any of us, not everyone gets the chance to say goodbye to the important people in their lives. Sudden deaths can happen without any warning. Accidents happen all of the time through no fault of anyone. What would you regret not telling someone today, if you were to die tomorrow? Death could happen to any one of us, at any time.
If you both can still see each other the next day, consider it a bonus.
palliverse.com 