The truth of palliative care

I had a lot of time to think and reflect while I sat by my father’s bedside in those last few days.

His decline was quick and relentless. On Wednesday we were preparing for another shot at chemotherapy. On Thursday he was taken by ambulance to the emergency department with pneumonia. On Friday we were summoned to a family meeting to discuss arrangements for end of life care. On Saturday he commenced intravenous therapy for feeding and medication. On Sunday we were called to the hospital at 5.30am when he took a turn for the worse and the decision was made to cease all active treatment. And on Monday, after being unresponsive all day, he finally lost his fight for life.

Our experience of palliative care was therefore brief but I still observed and learned many things during those final days.

Truth of palliative care

After weeks of constant observations, tests, appointments and probing & prodding, when the decision is finally made to cease active treatment, you are suddenly left very much alone. You are not neglected, not at all, but the change in attention is stark and immediate.

There are no longer the hourly interruptions to gauge heart rate, pulse, blood pressure and oxygen saturation levels. Once the decision is made to stop antibiotics, fluids and feeding, there really is no need to continue to observe and record these fluctuations as they are all expected to decline and cease naturally, anyway.

You are no longer regularly visited by allied health professionals, dedicated to readying a patient for the return home. Without any expectation of emerging from hospital and returning home, their visits are confined instead to a passing visit to check on patient and family welfare. They are needed more urgently by others now.

The food trolley and TV rental cart usually roll on by as well – they know there is no point in stopping now we are nearing the end of the journey. They have visited enough times already to know what the answer will inevitably be and silently understand there will be no further patronage from our room.

The patient care board, normally awash with instructions, also becomes bare, no longer updated or consulted. With the ceasing of active treatments, the board suddenly becomes obsolete – there is no plan to follow other than to let nature take it’s course. No need now to note every action or instruction.

As a result of these changes, the room becomes quieter and more peaceful. Confining cords and tubing are removed. The noisy machines fall silent. Family, not staff, become the dominant force and re-emerge as experts in care. The focus turns from the invasive – treatments and therapies to cure – to the more caring – embracing strategies to make the patient as comfortable as possible instead.

The very “hospital-ness” of the room is stripped away until all that’s left is a bed, chairs and the personal possessions that have accumulated over the length of their stay. A bunch of flowers in a makeshift vase. A pile of newspapers growing on the side table. Slippers left carelessly on the floor. A warm flannelette jacket thrown across the back of the comfiest chair in the room.

The sounds of beeps and alarms are traded for the sound of breathing – sometimes calm, sometimes laboured. The muffled sounds of the constant activity beyond the walls of the room filter through and provide a brief respite from the heavy silence within. They remind you there is a world outside, going about its business and looking to the future.

In stark contrast, the silence in the room is heavy with unspoken words. Weighed down by the reality of what’s to come. Consumed by watching, waiting and worrying.

After all the noise and the activity and the monitoring of the hospital ward, being suddenly left alone to wait for the inevitable is disconcerting. And lonely. And utterly devastating.

This is the truth of palliative care.

Linking up with Jess for #IBOT

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22 Responses

  1. Jo Tracey says:

    Sending you much support right now. This was starkly, yet beautifully said. xx
    Jo Tracey recently posted..Changing Rooms…

  2. Love to you Kirsty. Most have us have either been through this or will. Not that knowing that makes it any easier xxx
    Pinky Poinker recently posted..How Pinky Hacks Life!

  3. Sending massive hugs. Have been thinking of you and your family.
    Raych aka Mystery Case recently posted..Worth Casing Blog Spotlight | Flat Bum Mum

  4. My goodness Kirst you have taken me back to when I was with my granddad during his final few hours. We spent days with him, but I had to return to work but visited him during my lunch break, gave him a big hug and kiss and told him I’d be back after work, he slipped away quietly just after I left. Big love and light to you, please be kind and gentle to yourself, I’ve found that grief comes in waves, often when you least expect it xxxx
    Emily @ Have A Laugh On Me recently posted..Mother admits she was wrong.

  5. I’ve been thinking of you a lot Kirsty. My Dad turns 85 in November and is not as sturdy as he once was. As I’ve mentioned before, I have many fears as you’ve had. Now you’ve had to face one of your fears and eventually I will too. Sending you lots of love, support and hugs. Be gentle with yourself! xoxo
    Min@WriteoftheMiddle recently posted..My Elevator Pitch!

  6. jess says:

    I have been blessed to never experience that before, and am sending many hugs your way x
    jess recently posted..If you could be paused at any age, what would it be?

  7. This totally just made me cry Kirsty because it felt like I was in the room with you. I’ve never had to endure it myself as when my grandfather died of cancer they’d decided to take him home to let nature run its course. I’m sure your dad would’ve appreciated you all being there with him and being surrounded by family rather than the constant interruption of drs and nurses over the last few hours.
    Toni @ Finding Myself Young recently posted..Mummy Must Have Review | Summer lane

  8. Denyse says:

    Oh Kirsty, that brought back memories for me but in mum’s case she was in palliative care for over 3 weeks. The suddenness for you all with your Dad must play on in your memories over & over… So sad, so final and so incredibly rawly & well written. Love to you D xxx
    Denyse recently posted..Marianne Williamson & WakeUp Project. 188/365.

  9. Fluffly says:

    It’s a loss that can never be reconciled. All my love xxx
    Fluffly recently posted..Get your hotel out of the gutter.

  10. So sorry to hear about your Father, thinking of you as you as you grieve your loss! x
    stephanie@stephsjoy recently posted..Family adventures

  11. Julia says:

    This post broke my heart. I am deeply sorry for your loss. Much love to you and your family.

  12. Oh Kirsty, I am just so very sorry for your loss. I can’t even imagine how hard it is for you all right now.
    I must admit, I never considered what it was like in the hospital once that call was made. It must seem so strange when it happens. I wonder how the medical staff feel, about not stepping in any more. It must be hard for them too.
    Bug hugs. I hope you are all going well now. Or as well as you can be. xx
    EssentiallyJess recently posted..The Girl Who Liked to Write

  13. Ness says:

    This is powerful writing. I’m scared that this is what is in store with my MIL. She’s at home now, but they have already ceased all treatments. Big hugs to you. xo
    Ness recently posted..On hobbies and why I don’t vlog

  14. Kathy says:

    Kirsty my heart goes out to you. Your words are powerful and the sense of emptiness and finality is so stark.Hugs. X
    Kathy recently posted..How to create a yoga journal

  15. Hugzilla says:

    This is such a heartbreaking post. I am so very sorry for your loss. I hope that in some way he felt your presence and was comforted by that as his time drew to a close. Thoughts are with you at this difficult time x
    Hugzilla recently posted..The Idiot’s Guide to Not Being a Wanker at Networking Events

  16. Sally says:

    So sorry for your loss, Kirsty. Must have been so hard for it all to happen so quickly and not have much chance to prepare for the inevitable 🙁

  17. I was so sorry to hear of your loss Kirsty. This is a really accurate description of palliative care – we went through a very similar thing with my beautiful mother-in-law. We were so thankful though for the amazing support of the hospital staff as well as family and friends. Thinking of you and your family. xxx
    Lucy @ Bake Play Smile recently posted..Little Mini Quiches with Bacon, Egg & Cheese

  18. Vanessa says:

    I wondered why I could imagine this so well, the breathing beeps in particular. Then I remembered being in the ED of the hospital in Brisbane in the middle of the night when we’d been called in by my in-laws as a family member wasn’t expected to last the night. The other noises just fade away as you watch them breathing and hear the beeps. The hand-squeezes as the mother tells them to fight and that they’re not allowed to leave yet.
    Vanessa recently posted..5 Random Facts About Me

  19. Carol says:

    This reminds of my Dad – his final month in the hospital was no joke. I was a highschooler back then and seeing my Dad having tubes in his mouth, machine attached to gauge heart rate, pulse, blood pressure and oxygen saturation levels or anything devices just to extend his life, they did it. I really don’t know that he’s in THAT BAD condition. It broke everyone’s heart as he passed away on the mid week of December. Thankfully, that my Mom took her supplements everyday, she remained calm and composed. Theanine serene has been buddy of her health because it does not only reduces anxiety but also attenuates the blood-pressure increase in high-stress-response adults. Just thankful about that, I can’t imagine losing another love of my life. Sending hugs and kisses to you Kirst. XOXO
    Carol recently posted..What Causes Stress?

  20. Zita says:

    It is such a terrible time Kirsty. I remember it with my sister all too well. It’s one of those moments that will sadly stay with you for many years to come. My love and best wishes to you and your family. xo
    Zita recently posted..Where am I Wednesday

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