Working in palliative care you would think that we all live our lives without regrets. We all live each day to the fullest and try to make the most of all our relationships. Living as if it’s your last day. But, no, we don’t. It’s not happening to us, even though we know it could happen to any of us at any time.
Is it because we become desensitized to all the suffering that we witness? In people who are burnt out or suffering from compassion fatigue they may be less able to empathize with the people they are caring for. You can’t allow yourself to become enmeshed in each case you deal with. Too strong a connection, too strong an identification and each death will be felt tragically. You can only handle so many tragic events, and certainly not on a daily basis.
The opposite can occur, in which clinicians become too detached from their patients. They are unable to connect with a fellow human being who suffers. Patients feel like they are being looked after by a robot. Would more consistent care be delivered by robotic helpers? What is it that is so special about human clinicians? Could a robot ever be a replacement?
Chinese New Year is a time for family to gather. People make their way home from all over the world for a chance to catch up with each other. It’s a time for the annual family photo, making the most of the opportunity when everyone is there together. A rare occasion these days to have the children and the grandchildren altogether in one place at one time.
Looking back the old photos tell a story of a family’s life together. Over the years the pictures change. The parents get older. The children grow up and become parents themselves. The next generation is welcomed. The family dog looks less and less alert. The first grandchild is joined by another. A few photos later and there are more babies. The family dog disappears from the photos. The children look more tired and world-weary. The grandchildren look taller in each new photo.
The photos of the past three years looked different as many families could not gather for their annual reunion. Replaced by screenshots of virtual gatherings. Better than not seeing each other at all, but not quite the same due to lag and other factors. Not being able to taste Grandmas’s signature dish, her stir-fried rice vermicelli. Not being able to eat New Year Cakes together. No red packets could exchange hands.
As time goes by the photos will change even more. The grandparents start to look elderly. The parents start to have grey hair. The young ones may not be able to make it back due to university or work commitments. The eldest grandson proudly presents his grandparents with the first red packet he earned himself in his first year of working. Pure pride beams in the smile of his grandmother as she receives the auspicious gift.
People start to disappear from the photos as health issues start to wreak their havoc. One of the grandparent’s faces looks different after the stroke. The following year there is a gap in the space where one of the parents always stood. Two of the grandchildren will have to finish growing up without one of their parents.
The family tradition will persist. The gathering, the family meal, followed by the family photo. The life changes will continue to occur and will be writ on the faces of those photographed. The ups and downs of the year. The challenges encountered, the successes and failures. What we have gained and what we have lost all feature in these family photos.
Humans can adapt to many different situations. It may take a few days to acclimate to the weather at your trip’s destination, but you get used to the new situation. Physiological adaptation occurs with the senses. If you hear a repeated sound your brain will adapt to it and will start to filter it out. You will start to notice it less and that allows you to notice other sounds. The same occurs when you encounter pungent aromas, after a short period of time the smell will be less noticeable. Something similar occurs when you expose yourself to differences in temperature, e.g. sauna or ice bath.
This adaptation process will work to a certain extent and depends on your body’s coping ability. If your body is compromised in any way then your ability to adapt will be affected. Serious illnesses can lead to an inability to handle these situations. There is a limit to what you can cope with. This might be changed with training. Repeated exposure to the stimulus will lead to changes in the body and mind.
Adaptation and coping are not purely physical and the mind has a big part to play. I have looked after many people who have survived for much longer than I thought would be possible. I have often remarked that they are kept alive by sheer force of willpower. A strong mind will sustain a physical body much longer than expected. People with strong beliefs or reasons to stay alive may also outlive their prognoses.
This inner strength lies somewhere deep inside the individual and their determination may have resulted in many successes in the past. These people might be described as stubborn, and like most personality traits people will stay true to themselves right until the end. Sometimes people have to actively let go before they can finish their current life. One person said, “There’s too much love around me, I can’t leave when there is so much love.” That’s why some people will wait until there is no one around before they can die. They didn’t want anyone to witness their very end.
We all make choices. Survival is not mandatory. It is an active choice that many of us make. Adapt or die. It’s not that simple. Even coping with a change in time zone can be a challenge as I am finding out today. Yawn.
After the emotionally heavy meeting with the doctors, they needed something to balance things out. There had been so much information, so much disappointment. They needed something to take their minds off the grim reality.
Friends visited and brought their little children. “Uncle we want to ride on the train.” The tiny children got on board the footrests of the power chair. “Choo, Choo, Choo, Choo, Choo, Choo, Choo, Choo around the room.” Great big smiles on little faces. He had a few minutes of fun with their friends’ little kids.
A guitar was brought out and the room was filled with music. His favourite song was played and he sang along. Heart-breaking words sung from the soul. Hanging out with their friends was better than any medicines or treatments the doctors provided. A short break, smiles, laughter, and stories shared. Food shared. Love shared.
The smile said it all. Everyone felt better after a dose of normality. Hanging out with their besties and having some fun. Playing together across three generations.
From next week I’m joining 199 others to explore the concept of utopias.
“To create a future that works, we must work together.” – Margaret Atwood
I’m proud to have been selected as a Fellow in Practical Utopias: An Exploration of the Possible led by @MargaretAtwood on @discolearn!
This is a once-in-a-lifetime opportunity to learn and collaborate with 200 changemakers from around the globe to unlock practical solutions to some of humanity’s biggest challenges, the climate crisis being foremost.
A lot of importance is placed on the first thousand days of life and that is rightly so. The first three years of life are the formative years and can make all the difference in someone’s life. Some of the crucial attachments are formed and if things do not go well, there may be major setbacks which affect the rest of life in many ways.
What about the last thousand days of life? How a person lives in their final days needs to be considered. All of us who are born and live will one day die. Exactly when we do not know. People with life-limiting illnesses will live for much shorter periods than most people of similar ages. Illness has a detrimental effect on a person. Their physiological age no longer matches their chronological age. People with life-limiting illnesses can be thought of as frailer. Their organs are under strain from illness and may not function so well. They need the input of the whole multi-disciplinary team. Occupational Therapy and Physiotherapy input may become essential components in maintaining functional ability and independence.
The New Zealand Health Strategy was published in 2016 and it aspired for all New Zealanders to live well, stay well, and get well. No mention was made of dying well, despite all New Zealanders dying at some stage. Also in 2016 was published the Healthy Ageing Strategy aimed to have, “Older people live well, age well and have a respectful end of life in age-friendly communities.” This was followed in 2017 by the Palliative Care (In)Action Plan, which talked about planning a lot of planning but not much action.
Hey, let’s form some committees to plan for planning to take action. That will only take ten years or so, by that time a miracle would’ve happened and death would’ve been cured. Not quite, but the biggest health sector reforms in a generation started taking place on 1 July 2022, revealing a mystery to be solved. What will happen to us all? What opportunities for long-term palliative care partnerships may become available? What opportunities can we make for ourselves to ensure that palliative care/hospice remains relevant now and into the future? How can we shape the last thousand days of New Zealanders’ lives? Time to be creative and innovative. Time for some alchemy, time to transform talk into action. What do we want palliative care/hospice to be like in five years? Ten years? 25 years?
Hey, wait a minute, we haven’t sorted out the five-year survival of the New Zealand hospice sector yet. Maybe that needs to be the top priority.
We human beings have a natural tendency to look for the bad in any situation we encounter. This is a protective mechanism as we need to be able to deal with any threats we may come across. In times past this might have been crucial in keeping us alive but the level of threat that we encounter in modern day life is much less than what our ancestors experienced long ago. Can we change our outlook on life and could this be of benefit to other people?
I came across the concept of good finding as an exercise I completed when I was part of Akimbo’s altMBA last year. Each day look out for good things that people in your life are doing and let them know that you have noticed them. Be on the lookout as you will need to find at least three things a day that viewers can choose from. Do it for the next 30 days to establish the habit and then see what happens to the world around you and your view of it.
How does it make you feel? How does it make the recipient feel? What other changes do you notice?
Give it a go, who knows, things may never be the same again.
Two things are certain in this life, we are born and we will one day die. The time of death is uncertain, and in our life between these two we try and be of benefit to our families, community, country and the world at large.
We are all part of the same human family; we are all interconnected. This has been highlighted over the past two years with the pandemic. News bulletins brought us graphic images of family and friends mourning because they were not able to be with their loved ones before death and for the funeral. Harrowing images of countries being in lockdown showed us so many people dying daily and corpses being loaded into trucks heading to the cemetery for mass graves.
For a while the world went quiet as we all felt the sorrow of people who were unknown to us, as well as the fear of what lay ahead. We each dealt with it differently according to our cultural background and conditional on whether we are able to face our own mortality.
Fear is a feeling that comes usually because we don’t know about the issue that is confronting us, we have no experience with it, and we can’t predict what is going to happen. We don’t know what to do. Losing confidence in ourselves, we get shaky.
It is an indictment on us all that we can talk to someone on the other side of the world and even in space through technology, but because of fear avoid face-to-face communication with a work-mate or someone we see every day, or people within our own family… but especially someone who is dying.
Reincarnation was one of the topics of conversation in the first room this morning. Our patient was a believer and had told his wife that she would come back as a dog. Unfortunately one of their daughters had died only a few years ago. It is always difficult for parents to deal with, as it goes against nature’s order to have a child die before a parent. One of the tragedies in life that elderly people would like to avoid if at all possible. Their daughter had died but had left her traces everywhere.
She had always loved butterflies, and had grown lots of swan plants in order to provide food for her favourite Monarch butterflies. She had a keen eye for their caterpillars and could see them from a distance, their yellow, black and white lines indicating their presence. She especially loved the pupae/cocoons that would form as the caterpillars went through the biggest changes in their lives, metamorphosis. Coming out the other side of the process transformed, with a new outlook on life and the ability to fly. Looking so different in colour scheme and features. She had always loved to have butterflies around. In some cultures it is believed that butterflies are visiting dead friends and family members who have come to see you from the other side of the grave. This is a comforting thing to have your ancestors come to see how you are.
Our patient had been steadily deteriorating over the past week, and he and the family had derived some comfort in being visited by Monarch butterflies. It was thought that their late daughter/sister was visiting their father as he entered his final cocoon state, just before dying. I told them that when people die in our hospice we would affix a butterfly to the door.
I have often drawn cocoons on our patient list board to indicate that people are undergoing the final transformation in their life, the dying process. One in which everything starts to wind down, the heart, lungs and other organ functions change. A person becomes sleepier, and less clear in their mind, Nature or a higher power’s way of protecting the dying person from the full experience of dying.
“Please keep on talking to him, he can hear you, but might not be able to respond to you.” Family members were considering leaving for home to come back again soon, but I advised that he could die at anytime, and that traveling under lockdown restrictions was not as easy as usual. Probably better to hang around and support each other for a few more days.
There is nothing wrong with holding hands in hospice. The problem is when that is the only treatment that you have to offer.
When modern hospice started there may have been less that could be done for patients thus holding hands may have had to be one of the only treatments available. If they couldn’t control your symptoms then at least you didn’t have to die alone and having someone hold your hand might provide some comfort.
Hospices may have started off as places where semi-retired doctors, nurses and others might go to work when they were wanting an easy job at the end of their careers but modern day hospice requires staff who are willing to continue learning, to grow their skills and knowledge as palliative care situations have become increasingly complex situations. Due to advances in medical treatments people are living longer than they ever have before. The silver tsunami is the greatest achievement of modern medicine, people are able to live to old ages.
palliverse.com 