Leia Stevens-Taylor makes the case for why professionalism and empathy can – and should – go hand in hand…
This month, I am not so much reflecting as sending out a reassuring plea to all those training or working, families and carers alike.
Please don’t forget to be human.
This may sound silly, and you may be thinking that I’m going to go off on a tangent about weaving baskets and holding hands in circles, but I’m not.
When seeing a palliative patient recently, I had a student with me. This lady had extensive cancer and was so frail that it was evidently upsetting for the family and the staff looking after her. She was so underweight, and her body so ravaged, that she looked at least 90 years old – yet was only 36.
Her husband visited daily and spent many nights in the chair by her side. Because this patient was so ill and coming to the end of her life in such a tragic way, it was a very sensitive situation but one that wouldn’t be lengthy. Having met the patient with her family, I knew that she wanted to be at home when the time came. I had a student with me for the day, who had not met this patient, but after asking the patient’s permission for the student to observe, she agreed and we both attended an access visit to ascertain that her home environment would be appropriate for a hospital bed and other equipment identified.
Upon returning to the ward the patient had been given some bad news. Her cancer had spread, she had developed a chest infection that she was unlikely able to fight and her prognosis was even poorer than the few weeks she had been given. We needed to decide if she was well enough to go home now.
The student and I sat with the palliative care nurse, the patient and her husband. As OTs always do, we asked what it was that the patient and her husband wanted from OT input. The simple request they agreed on was that they wanted to share a bed.
It was agreed that as the patient had no pressure areas or broken skin, she could go home to her own bed with a double topper mattress (a thin mattress about two inches thick that provides extra pressure relief), which would mean that she and her husband could share a bed and the patient would not be at increased risk for the few days she would be in bed. We decided against using a hoist, and that the patient would be cared for in bed so as to maintain her dignity and minimise her discomfort as much as possible.
A mutual wish
At this point the palliative care nurse left, as the nursing needs had been discussed. The discussion then turned to intimacy, and how the husband could handle and ‘be intimate’ with his wife, as they had discussed it as a mutual wish. At this point the patient began to cry. I held her hand and I also began to cry. I honestly and openly said to the patient “This is,” – I admit I used a word here not for repetition – “and it’s not fair. You can do whatever you feel able to, and be however you can to be happy and comfortable.”
I discussed with them forms of sexual intimacy that didn’t need excessive energy or lots of movement, and explained that even just being with your partner in an intimate way without having sex can be satisfactory in this situation – laying side by side and just holding each other. At this point I think we had all had a good blub. The couple were grateful, and the patient was discharged the next day. Sadly she passed away 48 hours later.
At the student’s supervision the next day (with difficult cases such as this I like to ‘debrief’ as soon as possible) the student stated that she felt my behaviour – the crying and saying someone’s situation wasn’t fair – had been inappropriate and made her uncomfortable. I accepted this, and asked her how she felt I could have been. Her response was ‘More professional’.
The definition of ‘professional’
This saddened me a little. Maybe you agree – maybe you too feel my behaviour was inappropriate or unprofessional. To which I would say, since when did we have to remove all humanity and empathy to be professional? When was it deemed ‘professional’ to not hold a crying patient’s hand?
You know what, dear readers? If that is professional, then I guess I’m not. If it were your mother, wife, sister or friend – or even yourself – would you want every professional you saw to be frank, unfeeling and clinical about the last days of your life, and the sensitive decisions you and your family needed to make? I may not be the perfect OT, but after receiving a letter from the husband that thanked me for being so heartfelt and for making her final moments what she wanted them to be, I’m proud to be the ‘unprofessional’ OT that I am.