It had been over two years since we had last met. Memories of the day came back to me in flashes.
I welcomed the family to our venue, meeting family members who had travelled from afar to be there. I remember not wanting to intrude, to be helpful but not in their way. This was her day and I didn’t want to waste any of her precious time.
I recall how it felt to walk back into the room three hours later. With experience, you can measure the emotional temperature of the room in an instant. There was warmth, there was talk of happy memories, there was love. There was laughter, there were tears. Favourite foods and drinks were being shared. There was champagne, there was Strawberry Rocky Road ice cream on sticks. People were gathered for a celebration of a life. A life cut short by major illness, a life interrupted by debility and indignity.
It was still early on in our experience, only the third time we had hosted. It was nice. In the last hour, everyone had the chance to say their goodbyes in the privacy of the bedroom. The doctor arrived and was not constrained by time, he wanted her to take as much time as she needed. It was all about what she wanted, that’s why we had all gathered together. To be with her at the end time of her choosing. Family, friends and healthcare professionals assembled for a final farewell.
The room was full to the brim. The question was asked again, “Are you sure you want this.” The same slurred but steadfast answer, “Yes,” steely resolve obvious in her focused eyes. Making this decision had brought her back not just some control, but had also brought back her determined personality. She had seemed more like herself than she had for years. She was going to leave on her terms, of her own volition.
The last thing she said was, “I love you,” as she hugged her father. She held her son’s hand as she fell asleep for the final time.
I had a conversation with our spiritual care advisor today about blessing the room after a patient has died. It would have to be done in a way that would be respectful of people’s belief systems, even if they have a non-belief. Why are we thinking of doing it? A chance for final closure. A way of saying goodbye. Rituals are important in life and this gives us something that we could do in a meaningful fashion. This is part of what we do after someone has died. We remember the person and their loved ones. We give permission for whatever energies have been left in the room to move on. To clear the room out, ready and waiting to help the next person and their family. A time to farewell a patient and their family whom we might never see again.
We want to do things right, in a first do no harm manner, we don’t want to cause any offence. The blessings are not intended to be from any particular belief system. The staff providing the room blessing need to do so in a compassionate manner. They might have a personal spiritual belief of their own, but in this instance I want them to put that aside briefly, to present as their best professional self a generic blessing that would cover things at a bare minimum. People would be trained to give this blessing to allow the room to be put back into use again quickly. This would allow the cleaners to go in and prepare the room for the next person who will occupy the room.
Letting out the sad, angry energy that might still be there. Allowing the person’s spirit to move to where it needs to go. Spiritually resetting the room to be a blank canvas again. To allow the next person and their family to make their imprint on the room. To clean the silk screen before the next print is made. Is there something missing? Someone missing? A chance to air out the room and freshen it up for the next guests. In an acceptable fashion for all. People need to be empowered to do the right thing.
Before I left for my holiday I turned on the automatic replies. Correspondents needed to know that I would be away on leave for a fortnight. Not a long break but enough to recharge and unwind. It takes at least a week to really start relaxing. In the past, I had been used to pushing hard and living on adrenaline that if I relaxed too deeply my immune system would crash and I’d catch a cold. These days I make sure I have something to do each day, a task of some sort that needs to be done. Nothing too stressful but something to keep me from relaxing completely. The tightrope balancing act of modern-day life. Rest but not too much too fast.
It had been a while since I’d been on leave. Also been a while since I’ve had to say goodbye to patients that I thought I wouldn’t ever see again. People who I thought would no longer be alive by the time I returned. Some of them I’d only just met in the last few weeks, others I had known for many months. Some of the recipients knew what I meant without me having to say anything more. Others had different ideas about their situation and believed they would still be alive to see in the New Year 2024, let alone the current one. I also said goodbye to the patients’ family members as well.
Goodbyes in palliative care are usually final. Most of the time you will never see the patient or their family members ever again. In fact, each interaction you have with people you deal with may be the very last time you see them. You have to make sure you don’t leave things in a bad way, as you may never get the chance to sort things out. You don’t want what may be one of the final interactions for the other human being to be a poor one.
She had become sleepier over the course of the week. She would still rouse to voice at times. Her eyes would open for a few seconds and then close again. A few days ago she was still talking but her voice became weaker as the days passed. It was becoming harder to understand her and then she stopped talking.
She had been unresponsive two days ago and would only make occasional sounds when being washed or turned in bed. This is what happens as a person dies, they become less able to communicate. She had gone into a coma.
We encourage people to say what they need to their unconscious loved ones.
“They can hear you and understand you. They will try and respond but may not be able to do so anymore. Tell them what you need to.”
The nurse was talking to the husband about who the patient had wanted around.
“She wanted her friend to come and visit.”
“I think she is too unwell now, I don’t think she should come over.”
“But she specifically had asked for her to come.”
“Doesn’t matter. I’m in charge now.”
Immediately from the bed came two sharp coughs.
A phone call was then made and the friend visited later in the morning.
I heard the loud and proud singing from the carpark. The vibrant and powerful voices of the Gospel Choir required no amplification. Their harmonies stirred even the singers to tears, let alone their audience.
We were all gathered to celebrate a life and to say goodbye. In my 23 years of medical practice, I had previously been to only one patient’s funeral. This was number two.
The husband had requested that we all wore black. I wore a dark suit, a white shirt and a tie with yellow smiley emojis. Partially hidden under dark coats were yellow and other colourful dresses. Vivid scarves provided obvious contrast to otherwise fully black outfits. Yellow earrings dangled from the ear lobes of some of the ladies. The young men wore black, apart from their highly decorated sneakers.
We all stood up and the room quietened as the pallbearers carried the gleaming yellow coffin with loving care.
I looked through the window at the front of the room and I noticed a small yellow feathered bird frolicking in the bubbling waters of the spherical fountain.
It was lovely to hear about our patient’s rich life from friends, workmates and family members. In Palliative Care/Hospice we only meet people when they are very unwell. We often don’t know what they were like before their illness changed every thing.
I had been asked to talk on behalf of our hospice. I talked about the strongest patient I had ever met in my fifteen years of palliative care. Someone who had surprised me with her resilience. She made me negotiate every change in medication over the past six months. I talked about when I thought she was about to fall asleep for the last time and then hours later she went out to the shopping mall.
She had wanted to buy the piece of furniture for her living room for some years, but she had been too busy. Working, caring for her family, entertaining friends, and living a full life. Then the illness and its treatments had taken over her calendar appointments. In her last weeks, she had filled in the last remaining space in her living room, the seat was upholstered, of course, in yellow.
Education was always so important, she didn’t want the kids to miss out on school. As many children were present for her funeral, a science lesson was shared about Mitochondria.
I talked about when she saw my yellow scrubs for the first time. She smiled and laughed before changing her outfit. She had asked her friend to take a photo of us in our yellow outfits. Both of us also wore matching socks.
In her final weeks, I had worn my yellow scrubs more often. Each day I thought it might be the last time she would see them. I told her again that whenever I wear my yellow scrubs in the future I would think of her.
The photos always get me. The montage accompanied by a heartbreaking song, showed happier and much healthier times. A younger couple with tiny toddlers in photos taken from various holiday trips in exotic locations. The pictures of the beautiful family, with the rest of their lives together to look forward to, deepened the ache of the afternoon gathering.
We all stood up as the six men took their places at the side of the sacred yellow vessel. They took their sombre steps out to the waiting hearse. We followed them outside and were offered white petals with which to say our final goodbyes.
Yellow balloons were released by her tuxedo and formal dress adorned children. Goodbye Mummy.
The sturdy videographer raised his arms in order to capture the right shot. The too-pale skin of his ample abdomen blinded us previously innocent bystanders. Captain Ahab would’ve been driven into a frenzy. We closed our eyes but a dark-coloured island continent was burned into our retinae. Thankfully we had not glimpsed Tasmania.
She would not have approved of his shirt not being tucked in and would’ve had a few choice words to share with him, in a polite but forthright manner.
We waved goodbye as the hearse rounded the corner.
She called him Grelly when she was young because she couldn’t say Grandad.
He used to pick her up every day from Kindy. Always the same routine when she got to her Mama’s house. She would sit next to Grelly and he would let her dunk her biscuits into his cup of tea. He didn’t mind if her biscuit fell in.
She entertained them by reciting the poems and songs she had learned. She loved it when they joined in and sang with her. Grelly would let her be the boss of the TV remote and watch her programmes with her. She didn’t mind that he didn’t know the words to Spongebob Squarepants because he made up for it by dancing with her when Bananas in Pyjamas came on. When she was sick he would phone her and tell her he and Mama were missing her.
When he became sick, she would rush in to see to see him. She would kiss them both and show them her drawings and tell him what she had done at Kindy.
She was a solicitor used to dealing with other people’s problems and separating the emotion from the facts. But today she looked tired, worn out, and close to tears.
“Noticed your not your usual self what’s the matter”? I asked.
“I’m caring for my dying mother at home and have been doing it for the last two months. I need to get home as quick as I can”.
“Do you have anyone helping you”? I inquired
“Sometimes my sister helps but she has three kids. Mostly it’s just me and mum, I had to move in with her temporarily to take care of her because she couldn’t manage on her own. I’m not sure if I can manage. I sleep in the armchair next to the bed”.
“Would it help if I sat with her while you do your work at home”?
A smile fleetingly replaced the stress on her face. ‘Here’s the address she said and my number if you get lost”.
“Ask your mum if I can come and see her, phone me if she says yes, no problem if she says no”.
Later that evening she phoned confirming it was okay.
As the rest of the passengers vacated the plane and went through in my head how to reassemble the collapsible stretcher that I would use to carry him off the plane. My patient had limited mobility and would not be able to help much in the transfer. I would have to reassemble the stretcher around him. As the final passengers left the plane I prepared the stretcher. Putting the left side down on the bed underneath his back, underneath the bedsheets as I had been instructed. I then asked him to roll towards me on the other side, which he was able to do, whilst I placed the other part of the stretcher underneath his other side. Hmm, there’s supposed to be a clicking sound as the pieces snap together. Why isn’t there a clicking sound?
I felt for the location of two pieces underneath the patient, Oh they are slightly misaligned. A slight shove upwards of the right side piece and CLICK it went into place. Okay just need to put together the head and feet components, then strap the patient in. By this time four burly porters had made their way to our seats, ready to help carry our patient off the plane. I gathered my medication bag and other equipment and we walked down the aisle to the back of the plane.
In healthcare it is important to set clear boundaries in order to care for yourself and your patients in a sustainable fashion. In the practice of palliative care, boundary setting is even more important, as the therapeutic relationship can be very intense and intimate at times. We have to keep in mind that this relationship will likely end soon, with the death of our patient. It can be a difficult balancing act; using your humanity to make important connections with another human being; while at the same time keeping professional distance to protect the both of you.
That being said, it is inevitable that there will be some cases which will hit you harder than others. When a deeper connection has been made, you will feel the loss and grief much more strongly. Informal reflection with your team members and professional supervision have an important role to play in keeping us palliative care providers safe to continue doing the important job that we have to do. We need to remind ourselves that this is a job that not everyone in healthcare can handle. That those of us who chose to work in palliative care, owe it to ourselves and our patients to look after ourselves. We are a precious resource and if we do not take care of ourselves, we will deny our patients and their families the difference that we can make in their lives, and deaths.
After almost ten years of working exclusively in full-time palliative care practice I would like to share a case that reminded me of just how human I am, and how much value I obtain from professional supervision and from sharing with my team members.
palliverse.com 