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.
For those of us working in Palliative Care, we must remind ourselves that we are only briefly there in our patients’ lives. We might only appear briefly in the final chapters if it was a book. We have a small part to play in a person’s life as a whole. We provide episodes of care which usually end with the death of our patient. Mostly this is also the end of our relationship with the patient’s loved ones. We make our decisions, offer our suggestions and give our advice before leaving for the day. Our involvement may be as short as hours to days, sometimes weeks to months, but it is a small period.
The patient and their loved ones have to live with their decisions for the rest of their lives. In the case of the patient, only a short time. For their family much longer. They have to do what is right for them. To make sure they have no regrets. To make sure that everything has been tried to keep someone alive.
Even after 15 years of full-time Palliative Care work it is still hard to step aside and let someone do something that you disagree with. You are confident you can control their severe symptoms, to provide comfort, but the patient and/or family are not wanting to buy what you are selling.
No one likes being rejected. To have their best attempts at helping not accepted. For alternatives to be chosen instead. It is hard to witness suffering and not do anything about it.
I want something else. I want to follow someone else’s recommendations.
I want to help you. I really want to help you. Please let me help you.
No. Thank you. I need to do this. We need to do this.
Don’t take it personally. You hardly even exist in their lives. It’s not about you. It’s about them, and what they want to do with what little remains of their life. They want to call the shots. To take control. Even if the only control they can take is a refusal of treatment. They are making one of the few choices they have left. It’s not about you. It’s about them. What is important to them? What is right for them?
I’ll get out of your way then.
It’s not like that.
Yes, it is. I’m getting in your way. I’m holding you up from doing what you need to do. You know where to find me if you change your mind.
It was important to keep on side with them, to show that we would listen and allow them to take part in the decision-making. That we meant what we said. You are the driver, not me.
Our patient might’ve suffered more than they had to but it was the right thing to do for them and their loved ones. They did what they needed to do. So they could live with their decisions, for the rest of their lives.
“I’m just checking in with you. How are you today?”
“I’m too tired to fight today.”
“Me too, you really made me work hard yesterday.”
“I would really like a massage. Healthcare has under-utilised the benefits of therapeutic massage.”
“I’d agree with that. It is one of the alternative therapies that has been proven to make people feel better. A lot of the Pasifika cultures use massage as part of their healthcare systems.”
Nod.
“Us humans require physical contact. We don’t hug each other enough.”
His long arms tried to stretch outwards, but they could only move centimetres towards me due to weakness.
My arms went around what felt like a skeleton’s back. Sarcopenia is the medical term for the muscle wasting I felt.
A gentle embrace was shared. He was too weak to hug me tighter. I didn’t want to hurt him.
Followed by a firm handshake, our left hands surrounding each others’ right hands. All four hands shaking together.
The smiles in our eyes met each other. Retinae looked directly at retinae. A human connection was maintained but it was destined to be disconnected soon.
Our kindred bedside manner DNA started to unwind. One strand would come to an end soon, whilst the other would continue on.
He thanked me for the care provided.
I thanked him for his time and for the fun memories of our playing and joking together.
We shared a smile before we waved ‘see you later’ to each other.
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.
In the Chinese languages the word for the number 4 sounds like the word for death. Thus it is avoided as much as possible. In Chinese-dominated countries, buildings will have missing 4th, 14th, 24th floors, etc. On hotel room floors there will be missing rooms 4, 14, 24, etc. Such is the danger of the word that it must not be mentioned if at all possible. This can also occur in non-Chinese countries where members of the Chinese Diaspora have settled. Through a laborious application through the local city council, the former number 224 is now known as 222a.
To mention death is to welcome it. Don’t talk about it and you can avoid it. Keep away from hospitals if you don’t want to get sick. Don’t go to graveyards or the deadly malaise will be caught. Advance care planning can be a difficult subject to raise for members of such cultural/ethnic groups. Funeral insurance may be a hard sell. Death is not discussed and people become unfamiliar with it. What you don’t know about becomes a scary monster. Something to be feared.
Not many visitors want to take the tour of the local hospice. “What do you do for a job?” “Oh…you must be so…special,” whilst clutching a bulb of garlic in one hand and in the other prayer beads. Holy water, buy now before stocks run out.
The Palliative Care trainee greeted the Renal trainee, “How you doing?”
The Renal trainee replied, “I’m saving lives.”
The Palliative Care trainee thought to himself, “Sure you are, while I am saving quality of life.”
If people have trouble even talking about dying, how will they be when it comes to looking after dying people? How will the dying patient be treated? Will they be treated as a failure in life? Are they worthy of our care and attention? They can wait, they’re dying anyway. As if they had any say in the matter.
As medical technology has improved throughout the world, societies are less accepting that death is a fact of life. Death-denying cultures are on the rise at the detriment of some of the most vulnerable people on Earth, those who are dying. That doesn’t sound right to me. Maybe I’d better be careful in my choice of words.
Every summer the hospice is visited by thousands of flies.
We are situated next to a big park and flies are a constant presence in the warmer months.
They can be really annoying for our patients who may be too weak and tired to fend them off. Their family members may also have troubled keeping the flies away.
Every summer I have said that I would bring in an electric bug-zapping racquet to deal with the flies.
This summer I finally brought one in.
In recent weeks as well as doing a medical round I also do a fly-catching ward round at least once a day.
I made myself available 24/7 on-call for the purpose of catching pesky flies. I can be called in any time of the day or night.
This has led to great amusement for patients, family and staff members.
Yes, I am probably the most highly qualified pest control worker in the country.
As well as catching flies I practise some medicine as well.
I clear each room of flies and then I head outside to the balcony area and get rid of the ones that are out there as well.
It’s one man against thousands of flies but if it makes my patients’ time slightly more bearable it is worth it.
It is also a good way to add to my daily step counts.
I will continue to catch flies and expand my repertoire of work roles.
This is especially important each and every Flyday.
They had lived in New Zealand for many years and could speak English as their third language. Their English was pretty good but they did not feel confident when discussing medical issues with healthcare staff. Their children had grown up here but were busy with work. One child worked in NZ, the other child was overseas. Thanks to time zone differences, their overseas child would sometimes be available to help with translation during our patient’s clinic appointments. The patient and their spouse didn’t want to risk any misunderstandings when it came to discussing medications and treatment plans.
We had offered them a virtual appointment but they wanted to come in person. Face to face it was easier to communicate even with masks on. I greeted them in our shared second language, Mandarin Chinese. This made them feel at ease right away. They felt they would be able to communicate better with me. They had come for a pain review and I was able to quickly assess our patient. Our patient would be seeing their Oncologist the next day. I provided them with written instructions and also wrote a note to the Oncologist asking them for advice about another problem they had mentioned to me.
The communication was by no means perfect as my Mandarin is not 100% fluent, especially when talking about medical issues. I had to use occasional English words interspersed between paragraphs of Mandarin but we were able to understand each other well in terms of language and also cultural expectations. They were pleased to meet our pharmacist who could also speak Mandarin.
It felt good that our diversity and inclusion recruitment programme was making a difference. Our effort to reflect our demographic continues to be beneficial and is another patient-centric point of difference in the services we provide. We are doing better than before and will continue to keep trying to make our ability to connect better.
The reason your legs and tummy are swollen is because of your illness. When you are really unwell the body is under great strain and isn’t able to produce the protein that your body needs. Amongst other roles protein keeps water in your blood supply. When you don’t have enough protein in your blood the water will leak out into your tissues. That’s why your legs and abdomen are so swollen. This is not the kind of swelling which will respond to medications that make you lose water. They would make you lose water from your blood supply leading to dehydration but the fluid in your legs and abdomen would not decrease. Massage can help shift the excess fluid if the problem was blocked lymph glands, but it is unlikely to help the kind of swellings that you have. That being said it can be soothing and can make you more comfortable so I would encourage you to have gentle massages.
We try to be flexible when it comes to visiting hours here. We know that your energy levels are low and that you feel like you need to be at your best whenever your visitors are around. This can be exhausting. I would recommend that unless it is the people closest to you visiting that other visits be limited to ten minutes. You can blame this on me, “that nasty doctor has limited visiting times.” Your energy is a precious and scarce resource. We’re keen to help you save your energy for whatever you feel like doing. Please let us help you. We’re keen to try to make life easier for you if possible.
It’s not like what you see on TV. In real life, resuscitation doesn’t work so well. I’ve worked on many cardiac arrest calls in the past and almost 100% were not successful. In those few successful resuscitations, the person was left physically and mentally damaged. With your burden of disease, the chances of a successful resuscitation would be close to zero. The first thing they teach us in medical school is, “first do no harm.” If something that we are considering doing has questionable benefits but likely harm, we really need to think about it carefully. You have so much going on already, and the last thing we want to do is to make your situation worse. Some of our treatments could worsen things with little chance of benefit. If your heart or lungs were to stop working, we would not be able to bring you back. We would not perform CPR as it would cause you harm with no benefit at all. I don’t think you are at risk of having your heart or lungs stop just yet, but I have to be clear with you as to what to expect. I don’t want there to be any surprises between us. It’s not over yet. So let’s focus on making the most of your time. Let’s concentrate on something that will help you, treatments that can decrease your suffering, and make you more comfortable. Is there something that you have always wanted to do that you haven’t done yet? Is there something nice that we could help organise?
palliverse.com 