Living every moment when you’re dying
In New Zealand last week we celebrated Hospice Awareness Weak and to tell you the truth I’m not sure how impactful the week actually was. In part this was due to my lack of traditional media consumption; I don’t watch TV, I only occasionally read the print version of the newspaper, but I do listen to about an hour’s worth of national radio during my morning and afternoon commutes.
I’d love to know from my fellow Kiwis just how effective last week was in terms of raising awareness of hospice? Did people learn that most of the patients we look after are between the ages of 45-68 years old? And that most of our work is done in the community, visiting folk in their own homes? Did people arrive at a new understanding that ~70% of admissions to hospice inpatient units are for symptom management? That we aim to discharge most of our patients back to their homes? Yes, that does mean that ~30% of our admissions are for end of life care…and because of how precarious their health status may be, that there is of course a large overlap between these groups. People who come in for symptom management may deteriorate and may need to stay for end of life care. Did you know that the converse can occur too? That people can be admitted for end of life care, but may actually improve, and sometimes be fit for discharge home? What follows is one recent example.
He had been in hospital for a number of weeks, and had deteriorated markedly over the course of the last five days. Metastatic badness affecting his lungs and bones, causing severe shortness of breath and pains. The team treating him had diagnosed that he was dying and had placed him on the local revamped version of what had been the Liverpool Care Pathway, a clinical tool to ensure that adequate comfort measures were employed at the end of life. The doctors told the family that he might only have three days left to live.
He was transferred to the hospice inpatient unit and was deemed to be critically unwell. Two days later he was still very unwell, but was still holding his own. His symptoms were managed with medications and other non-pharmacological techniques. Despite medication in patch form he still had a strong desire to go outside to catch some “fresh air,” at least ten times a day, and five times per night. His pain was brought under control and over the next three days his appetite improved…yes, he had outlived his prognosis. There was always a member of his family at his side, both day and night. He had a lot of visitors, some from distant places, they brought with them gifts of his favourite foods, which were promptly devoured.
By the end of the first week he could self-propel himself outside for more “fresh air” breaks. He enjoyed the visits from friends and family, some of whom he had not spent time with for ages. He went for excursions outside with his children, which he enjoyed immensely although they left him exhausted afterwards. His condition had stabilised. Was it something to do with the more relaxing environment? The loving attention from his family? They certainly all enjoyed the bonus time that they had with him. Maybe the air was fresher than it had been in the hospital? We started to plan for his discharge, and a suitable residential care facility was booked for him. He would have to stay over the weekend as they couldn’t admit him until next Monday.
His breathing at times worsened markedly, but calmed down again after treatments. He went out on Saturday to proudly watch a future NRL player bring home to the family the “player of the match” award. He slept well that night. The next day he went to visit his mother’s grave, very appropriate for the second Sunday in May, which is when we honour our mums here in Kiwi-land.
“Living every moment” is the motto of the Hospices of New Zealand. We work hard to buy our patients comfort in order for them to at least have the chance to do what they want to with their remaining life time. Our patient certainly made the most of the extra time that he had been granted in the two weeks that he stayed with us. He was able to spend quality time with his loved ones, sometimes they just hung out and listened to music together. He took the opportunity to continue to create memories with his loved ones. Everything still looked good for discharge on Monday…and then…
…to be continued…
Nice challenge James, (looking forward to the continuation…). Hospice Week did pass by without huge fanfare- but thee were some great media events (NZHerald on line during the week). My reflection is that this si a week to celebrate meanignfulness and purpose in our work in honour fo the people we care for – and I am not sure I got that sense. I am not even convinced all Hospice care staff (clinical and non-clinical, support and retail) were even aware in any meaningful way, that it was in fact Hospice Awareness Week – talk about an oxymoron – lack of awareness in awareness week.
Our respective media teams did a very good job, but I am not sure all of us were “with” them. And this points to something else we need to become aware of and take care of – who we are as deliverers (terrible English, sorry) of Hospice care and service….more on that another time (as you say, to be continued….)
Yes, I agree. Our brains may have heard about the week, but our hearts were elsewhere. How can we expect Joe and Jane Public to engage with us, when our own people aren’t even engaged. Surely NZ can do better than this. Maybe when we both have more free-time…next year…we can do something about it.