Last week I received a phone call that has given me so much hope and excited me so much I had to write a blog about it.
A well-known and very respected intensivist (sexy word for ICU doctor or specialist physician – let’s call her Dr Desai for the purposes of this story) phoned me to see if we’d be willing to take her patient if she discharged him from ICU. To you, this may seem like an ordinary phone call, but it was a pivotal moment for my business on many levels. You see, doctors in an ICU set-up can almost always carry on treating a patient. Based on the medical tests and data that doctors receive, there is usually some intervention that can be applied to manage or treat the symptom, illness or diagnosis. The fact that they can always do something, does not however necessarily mean that they always SHOULD do something, but the lines are blurred and the area vividly grey. Often, once a person is admitted to the ICU, the institution simply allows treatment to spiral on and on and on.
I am not writing today because I have answers, or because I am critical of these doctors in any way. In fact, I am in utter awe of them; their knowledge, dedication and expertise. Rather, I am writing because I see from an outsider’s perspective how easy it is for everyone involved to be swallowed in the big corporate medicine machine – from nurses, to doctors, to patients . In this institutionalised system of processes, no one really matters, least of all the patient and their family. This phenomenon which we call modern medicine also swallows up and spits out medical staff. Our memories of a physio therapist who took her life on our premises after working in Millpark’s Covid ICU is forever scorched into our memories and who can forget the visuals of NHS staff barely surviving the virus without ever contracting it?
I do not understand how it happens that passionate, highly intelligent individuals who have a calling to heal end up in this smouldering cauldron of looking at data instead of looking at the person. I see from the outside how many doctors treat the same patient without once talking to each other, and sadly, very few doctors are allowed the time or have the emotional capacity left to talk to the families. By default, I spend a lot of time in ICU and the atmosphere is as loaded as a war zone at any given time.
When Dr Desai phoned, we chatted about Jack, her patient and she asked whether we would take him for palliative care. Many doctors never use this term. To them, it is admitting defeat. It means they have failed and cannot save their patient. They have declared war on death, but despite the fact that they eventually will lose the war, they keep taking up new battles, often at the expense of the patient.
Dr Desai said that she had spoken to the family (this sounds like nothing out of the ordinary, but I am telling you, MANY doctors do not do this) and they are so traumatised after weeks of their beloved Jack being in ICU that everyone agrees he needs to get out of hospital. She has explained to them that palliative care means he will not get better and they understand this. We discussed whether she needs to discharge him with his IV still intact for pain management. I explained to her that although we sometimes are forced to put IV’s up, our approach is less invasive. I suggest morphine syrup but she says Jack can no longer swallow and when I suggest a fentanyl patch instead she is happy with this. We are on the same page. Jack no longer needs tubes and pipes and beeping machines around him. He needs dignity; his family needs grace.
I went to see Jack. He has stopped eating, and cannot open his eyes. He is in an isolation room but it is not isolated enough to block out the constant noise and bright lights of ICU. I touched his shoulder and talked to him for some time. I don’t know if he could hear me. I finished off by asking: “Should we come and fetch you so you can stay with us?” and suddenly he mumbled, “Please”.
Jack’s wife and son got the wheels moving and arranged an ambulance. It was stressful as we needed to move him before the long weekend but somehow we managed. When they arrived in his room and saw that next to his hospital bed we had made a bed for his wife, she wept. The thought of being able to be by his side, holding his hand and by being valued as part of the team who cares for him emotionally was an idea so foreign to her after the trauma of the hospitalisation that she could not hold back the tears. Dr Desai gave Jack strong pain medication before the trauma of the move and we had a brilliant palliative care doctor ready to take over. A few hours after arriving Jack was fed dinner by his wife. He was in pain and it was a tough night, but somehow he had a sense of humour and was simply filled with gratitude that Dr Desai allowed this change of gear in his treatment.
When an end-of-life or palliative guest arrives, we immediately start a Signups group (like Whatsapp, but on steroids and secure). On this we have the doctor managing the treatment plan as well as doctors that stand in. There is an admin person, nurses, and in Jack’s case, wound care nurses, and then obviously myself and my team. I love, love, love how we always introduce the new guest on this group. It goes something like this:
Hey guys, our new patient is Jack. He is 65, he has been married to Lena for 40 years., He has four kids (Emma, Susan, John and Liam) and a host of grandkids. All his children live in SA. He is Catholic but rather lapsed. He worked in finance but has now retired. He supports Liverpool and his favourite food is pizza. He enjoys a triple distilled whisky.
Our profile picture is one of Jack when he was healthy and strong, surrounded by his loved ones.
And that is the FIRST message… one we ALWAYS need to go back to because THAT is Jack. Jack is not the sick, frail, broken man with the catheter and the nausea.
I see the difference this treatment option is making for Jack and his family and I’ve seen it numerous times before. It is my sincerest hope that palliative care becomes better understood and more widely recognised and respected in SA and that more doctors will take a leaf out of Dr Desai’s book and figure out a better way to determine when we should zoom out and stop seeing lots of problems to be solved or ailments to be treated, but a whole human being, worthy of dignity, love and compassion, and not just medical intervention.
As Dr Mranalini Verma put it: “There is an end to cure; there is no end to care.”