Why we should be encouraged to talk about death and dying
“I see it as a gate that opens onto the last part of life’s journey”, says Angela Cooke, Practice Development Lead . “You’re going through a garden, walking along a path. You’re talking to somebody and admiring the flowers that they and their family have planted. You’re beside them to support them, should they trip.
“At the end of this path, you come to a gate. Here, you have to stop, while – for the person that you’re accompanying –the journey continues. Then, you go back, to help another person along the path.”
It’s a poignant, powerful picture, made even more so by what it represents. Because the path Angela is talking about refers to guiding someone through the last stages of their life.
It’s rarely easy to talk openly about death. But for Angela –who’s been in nursing for 35 years –it’s a fundamental part of good palliative care. “We talk, listen, and allow time for them to think. Silence is so important, as it enables the person to process things, and respond with their own thoughts. It’s about them. It’s their journey.”
With our Northfleet located inpatient and outpatient units complementing a fully community-based care service, ellenor is the only hospice in the area that caters to individuals of all ages.
Despite having been a registered nurse for three and a half decades, Angela no longer cares for patients directly. Rather, her role involves the development of training for our professional clinicians, including doctors, nurses, and therapists.
In addition to overseeing these training programmes – on top of running courses herself – Angela also handles the management of external ‘upskilling’ for our clinical team: such as University-based courses, or further practical study.
Staff are always encouraged to disseminate what they’ve learnt to the rest of the team upon their completion of this extra education. As Angela explains, it’s a vital contributor not only to the team’s knowledge, but for the culture of continuous improvement characterising ellenor’s clinical professionals.
“Training is embedded in our clinical practice, and dissemination of learning through our experiences is key. Research is important, and patients’ stories of their own journeys are important educational tools. We learn a lot from our patients.
“Here at ellenor, we encourage reflection on our practices, and we look at case studies to review both the positive and negative points –what we did well, and what we could have done better. We do a lot of self-critique, and we’re very transparent. We look after one another as well because it’s a highly emotional environment.”
Part of navigating that charged setting involves having to conduct difficult conversations –particularly when it comes to death and dying and involving the families of palliative patients in discussions around their future and potential treatment options.
In fact, patient communication skills and relationship-building support have been a core part of Angela’s most recent development course for our clinical professionals. This latest training centres around raising the team’s awareness and understanding of‘ 'Treatment Escalation Plans’ (TEPs) – a type of document that maps out all appropriate avenues of treatment for a patient with a life-limiting condition.
TEPs include both the patient and their support network in important decisions about how and where they want to be treated –whether that’s at home, or in hospice care such as that provided by us –and allows them to specify where they wish to die. TEPs also encourage a dialogue between professionals, patients, and their families surrounding how specific treatment options may or may not be appropriate for their different health conditions.
“We can never prevent death,” Angela muses, “it will come to all of us.
“What’s important is what happens at the time of your death – for both you and the people around you. This is where TEPs come in. With them, everyone knows what’s going on, what your wishes are. It’s what we describe as a ‘good death’. No death is good, but you can make someone comfortable, and give them access to supporting services.”
Though not an entirely recent development (the TEP, though it’s been around since 2017, is derived from the much more well-established Hospital ACP (Advance Care Plan) document), the emergence of coronavirus –and its impact on the elderly and most vulnerable –has intensified the document’s necessity.
With more frail patients being exposed to potentially unnecessary treatment, ellenor was enlisted by the CCG (Clinical Commissioning Group) to launch training around the what, the why, and – crucially –the how of TEPs.
“That’s why we were approached –because we as a hospice are accustomed to having those difficult conversations. We take it for granted that it’s something we do day in, day out. It wasn’t until I started this training that I realised; it’s difficult for someone who isn’t accustomed to talking about death and dying – say, nurses from an acute clinical setting – to have these discussions, which can lead to the breaking of bad news.
“It’s a very hard conversation to have, because you need to be in touch with your own mortality to be able to talk about it with someone else.”
The training Angela does – much of which is drawn from her own wealth of experience in administering end of life care – is as much about equipping families for the future as it is about ensuring the comfort of the patient themselves.
“I’ve seen both – families that didn’t want to talk about it, and didn’t make plans [for death], and others that prepared for it; that accepted it. When you see families in the bereavement stage –the ones left behind –it’s those who haven’t planned that suffer the most. For the ones that have, death is a celebration of life.
“Planning and making decisions about what you want takes the burden off your loved ones. It’s ‘this is what they wanted’, rather than ‘I’m not sure if I’m making the right decision for them.’”
But the thing Angela loves most about her role here? “Making a difference. It’s an honour to be invited into the most difficult time of our patients’ lives. It’s an honour to be able to help them. We can’t prevent it, but we can walk alongside.”
After all, we’ll all make the journey through that garden gate at some stage –so it’s a relief that people like Angela and the team at ellenor will be there to keep pace with us when we do.