Why Dying Matters: Putting Planning, Preparation and Patient Autonomy First
Dr Sheraz Majeed has worked in palliative care for four years –several of those with ellenor.
As one of our team of four doctors –based across the charity’s Northfleet-based inpatient and outpatient units, as well as within the community –Dr Majeed’s role is more than a clinical one. In line with our ethos of ‘holistic care’, which pledges to treat the patient and their family, rather than the illness alone, Dr Majeed’s chief responsibility is to understand the individual needs of the patient.
“We look at their wishes; what they want to do in the last few days and weeks and months of their life,” Dr Majeed says. “Spending more time with the patient is something we do. We try to understand their social, psychological, financial, and emotional issues, as well as their spiritual and religious needs. Everything is looked at on both a holistic and a microscopic level. That’s what makes a difference.”
To achieve this, Dr Majeed works closely with our multidisciplinary team of staff. Regular meetings with other doctors, nurses, physiotherapists, occupational therapists, and counsellors help ensure that the needs of the patient and their family are not only understood, but kept firmly at the forefront, too.
“Our ultimate goal is to provide tailor-made care for each patient; to ask not only how we can improve on their symptoms, but also help them to understand the disease better. We want to help our patients come to terms with everything else which is going on, and support them and their families through the most difficult time in their life.”
One of the ways Dr Majeed and our clinical team achieve this bespoke approach to care is through the use of Advance Care Plans (ACPs) and Treatment Escalation Plans (TEPs). ACPs and TEPs are dynamic documents – created collaboratively with the patient, their loved ones, and their doctor –that specify the individual’s wishes for their future treatment in writing, should they become too ill to do so verbally, further down the line.
“What ACPs and TEPs do is help to evaluate what is important for the individual patient. One size doesn’t fit all. Sitting with a patient and their family and trying to understand what is important to them –this makes a difference later, when their condition is deteriorating. If decisions are made in advance, the path is clear as to how we support patients and their families.”
Another key strength of TEPs, Dr Majeed explains, is that they enable the recording and dissemination of a patient’s wishes to a wide range of care providers, including GPs, paramedics, and hospitals. It’s about making sure that whatever the patient chooses for their future, it’s actioned –and that the patient is able to die on their own terms.
Of course, a patient’s wishes are by no means limited to those of the clinical variety. Our team takes into account the religious, social, and emotional needs of the patient. This involves a dedication to spiritual care –which Dr Majeed defines as “anything that’s important to the patient” –and is something that the more personalised, individual approach of the hospice care model is well-placed to provide.
We were, for instance, able to secure a video message of support for a dying young patient from a boxer he idolised. The charity also went the extra mile to connect a Hindu patient to his spiritual advisor in Sri Lanka, which enabled him to die in peace.
Dr Majeed also relates the remarkable case of a life-limited patient from a foreign country, who was under our care in the hospice. His final wish was to return to the country of his birth –a quarter of the globe away, and a land which he hadn’t set foot upon for a decade –to see his mother.
Through hard work and “thinking outside the box”,we were able to fundraise for the patient, ultimately managing to secure the relevant travel documents and money to fly him back to his native country. He was reunited with his mother just a week before he died, his wish fulfilled.
This form of spiritual care is part of our wider, holistic approach. Yet this –along with death and dying at large –it’s something that’s still misunderstood.
“There’s a stigma attached to hospice care –that it’s ‘doom and gloom’. There’s a lot of work that still needs to be done to get people to understand that it’s not just about dying –there’s a lot more to it than that.
“A lot of people don’t want to talk about death – even though it’s one of the fundamentals of life. You live, you die. As a community – and as a society –we need to acknowledge that dying is something which is extremely important.”
Going forward, Dr Majeed calls for a greater understanding of hospice care and death. It’s also vital, he explains, to understand and engage with the local Gravesend community’s myriad culturally diverse groups to break down that taboo, and get people talking about death. Palliative care, Dr Majeed believes, should also be part of the curriculum for every doctor-in-training in the UK, and learned across all specialities and teams.
Dr Majeed’s key message for the community ahead of Dying Matters Week 2021?
“Let’s talk about it. Let’s be open, and be a little more holistic about –not just brush it under the carpet. It’s a difficult conversation, but difficult conversations are best done when we have that time to prepare –to think about it, navigate it, and discuss it.”