End-of-life care is a crucial concern for medics writes Dr Brendan O’Shea but it requires systemic planning. Here, he documents two contrasting cases in end-of-life care and the outcomes
It’s part of my practice to conduct a SIR (Significant Incident Review) when things go wrong. During this year, two people approaching end of life died. In one instance, the family were happy with the care provided and my impression was that the care was reasonable. In the other, aspects of care appeared most unsatisfactory, adding hugely to the anguish of the family. De-identified cases are presented here.
The first was that of Mary, an 89-year-old lady assigned to our practice 12 months previously. Diagnoses were that of end stage heart failure, renal failure, gout, progressive frailty and a mild degree of impaired cognitive function. On registration, she was noted to be on 24 medications, and living in a converted downstairs bedroom under the excellent care of her daughter and extended family. Care from the practice during the year chiefly related to five home visits, and several telephone consultations with her daughter. On the second home visit, her frailty and prognosis were discussed.
Her insight into her frailty and prognosis was excellent. When asked where would she like most of her medical care to be as things progressed, she was quick, clear, and adamant she absolutely wished to be at home in her own bed. I offered her and her daughter a copy of Think Ahead from the Irish Hospice Foundation.
‘You are both very organised, and I expect you have many of the points in this covered already, but you can use it as a checklist to see if there’s anything you missed out?’ What immediately emerged was a clear consensus she was to be cared for at home. There was a current medication list maintained in the home. Five days before she died, referrals to the Public Health Nurse Team and our fabulous Palliative Care Team resulted in visits from both, which included a syringe driver for the last three days. She died in her bed, surrounded by the people who loved her. Her daughter in the following months took comfort and confidence in the manner in which she and her family cared for this most important woman.
The second case was that of Helena, an 85-year-old lady who had come back to Ireland from abroad some four years earlier, initially to Dublin, and then to Co Kildare, to be cared for by her daughter and grandchild, where she and her husband settled for their twilight years. Both she and her husband had moderate and progressive impaired cognitive function. Initially, they were linked to a gerontology service in Dublin and were keen to maintain that. During the pandemic years they were not seen in practice. Helena’s penultimate visit with us included an initial Chronic Disease Management visit in December 2021.
Her other diagnoses included previous Type 2 Diabetes, CVA, Osteoporosis, Osteoarthritis, Depression, Hypertension, Hypothyroidism, and COPD. Her care was provided mainly by her daughter and grandson. The most pressing problem was the challenge posed by her maintaining an excellent functional capacity (she was physically very active) against a background of what in time became severe dementia. Given little direct engagement with her, we did not have a direct conversation regarding her end-of-life preferences. Her last contact with the practice included a telephone consultation with her daughter, inevitably on a Friday afternoon, as these things have a habit of happening.
The history included negative RPA tests against a background of worsening cough and shortness of breath. She was treated accordingly, with advice to be in touch if symptoms progressed. During the weekend, symptoms progressed. She was transferred to a local ED.
There she tested positive for Covid-19 and was admitted. In the course of this, she became distraught and was restrained. Her O2 saturation was found to be in the mid 80’s, and this was an evident cause of major concern to the staff caring for her.
Determined to ‘manage the numbers,’ she was restrained and affixed to high volume oxygen, which she persistently and vainly resisted, in a four-bedded acute medical ward. The protestations of her (very articulate) daughter were of no avail. I received her daughter’s distraught message to the practice on Monday morning. I messaged the ward and directed them to make an urgent referral to Palliative Care, who became involved that afternoon, which made an immediate difference, but only after 24 hours which will indelibly live in the mind and imagination of her daughter, whose hurt at losing her mother was compounded by an intense sense of guilt that she had failed and abandoned her mother to singularly inappropriate care. Her mother died the following day.
In considering these two contrasting cases, happening within months of each other, there are similarities and striking differences. Common to both was the dread of separation around the pandemic, and terror at being admitted to an acute hospital.
In the first case, we could understand that there was better end-of-life planning, which was timely, acceptable, and made it most unlikely that Mary would ever leave her own bed. In the second case, end-of-life planning did not happen in the same way. Reasons (not excuses) for this included the fact that Helena was very physically active right up to the weekend she became fatally unwell, and also that her involvement at the practice was absolutely minimal, reflecting the capability of her daughter and grandson in caring for her, and her husband. And, no detailed end-of-life planning conversation had happened. As her GP, I feel responsible for that.
The system
Our system has all the key ingredients for good end-of-life planning, but does not yet provide it systematically. ‘Think Ahead’ should be provided, preferably in general practice, to everyone aged 70 or older, and particularly in the face of progressive frailty. There is no adequate funding for GPs or GPNs to ensure that these conversations around end-of-life happen, are documented, and that systematic communication happens, so that the end-of-life Careplan, for example, is left in the home, communicated to the GP Co-Op, and/or made accessible to our colleagues in the acute hospital sector.
All of this could be cheaply and systematically handled through the use of a checklist approach, which would ensure better care, and more and timely consultation with the individual and family network. Prognosis is a neglected but essential skill.
You can refresh your ability to prognose by taking 10 minutes and reading into www.spict.org.uk. You can obtain copies of Think Ahead from the Irish Hospice Foundation, who also have an excellent one-page Handover Careplan, suitable for when people reach the pre-terminal phase, for use with your GP Co-Operative and for Acute Hospital Care, should it become necessary, on hospicefoundation.ie.
It would be most helpful if the HSE and IMO could support a Primary Care Palliative Care Scheme (administratively similar to The Combined Antenatal Care Scheme) to ensure General Practice can more effectively engage systematically and provide this essential last service for our patients.
If it isn’t paid for, it won’t get done. 