As a society our reluctance to confront death and dying leads to an unconscious phobia about discussing the things that can bring comfort when the end comes.
Through coaching work that supports people coming to terms with their own mortality and, as a non-medical end-of-life carer, I see signs of death-phobia in society everywhere around me, and it saddens me greatly. We seem to be afraid of accepting the reality that dying is a natural part of living. Fear of death manifests in an unwillingness to even discuss it. It can make fear of the unknown even more palpable. This death denial can hinder deep and soulful connections when it matters most.
But it doesn't have to be this way.
‘Conscious dying’ is a term that is starting to weave its way into the zeitgeist but I'm often asked, what does it actually mean?
Some people believe that conscious dying is akin to the concept of natural childbirth: no drugs, no interventions. You're just right there living it at the coalface of experience. Others wonder if it means you’ll be poked and prodded to be kept awake throughout the dying process. Some have asked if it is another term for voluntary euthanasia.
It is none of these things.
The simplest way to describe it is that conscious dying or dying consciously is being aware and awake to the fact that dying is a natural part of life. Facing dying in an awakened and 'conscious' way means that we're there for the journey and that we are awakened to the choices we can set out for the way we’d like our final days or moments to be managed if possible.
Often the phrase gets wrapped up in the silken scarves of sacred journeys and passages. While it is a profoundly sacred time, there is also the practical underbelly that simply says, the more conscious you are about death as part of life, the more freedom you have to make choices and requests, to lay out the things that you believe will bring you comfort when that time comes. And, contrary to the idea of drug-free birth, a conscious death also means it can involve an effective medication plan if required.
Death-phobia means we’ve become so focused on treating the potential cause of death that no room is left for a conversation about death itself.
Palliative care nurse and author, Barbara Karnes says, “Death is not painful, it is the effects of the disease one is suffering from that can be painful.” Conscious dying doesn't mean that we need to die in a painful way. What it does mean is that the person approaching their end of life knows that, as sad as that may be, endings like beginnings are a natural part of life. Viewed in this way, the term conscious dying, opens up a different type of conversation at the bedside. It invokes a new discussion around how a patient may be supported at the end of life.
Death-phobia means we’ve become so focused on treating the potential cause of death that no room is left for a conversation about death itself. This is reflected in studies that show less than 20% of medical students have any formal training about how to manage conversations with patients about dying[1]. But what if that were different? Conscious dying isn't about pushing death away or hastening it. It’s about acknowledging death within the natural cycle of life. And in my experience a conscious awareness of death and dying can dramatically reduce fear for everyone in the room.
The emergence of conscious dying as a term in the end-of-life care space creates an opportunity for a shift in communication style for health professionals and patients. Dying consciously is an invitation to deepen conversations around care and provide an opportunity for medical and multidisciplinary teams to engage with the idea of actively asking the patient or their family, what is the state of being the person wants to be in as they navigate these last days of life? Approaching this through a soulful lens has the potential to transform the dialogue of clinical care.
One of the things people fear most at the end of life is pain. The modern medicine paradigm presents a range of options for pain management. Palliative care and hospice staff understand intimately that the balance of sedative side effects of medication vs symptom control. Knowing what side the patient would prefer to lean on if it comes to it, is vital. And the patient is entitled to ask about the options available. A great first question can be as simple as, ‘what are the options I have for pain medication?’. Patients are entitled to communicate their wishes for the medical and non-medical ways they want to approach their death.
Another valuable part of the discussion between health professionals and family members of the dying is about the dying process itself. This can help those at the bedside better understand the natural process of the body as it winds down towards death and therefore understand that some things they may observe are not effects of medication. They are the lived experience of dying.
Death is part of life and not something that we can simply push away. For me, dying consciously means if pain medication is needed, let it be the medication that lets me be there for the journey.
[1] Sullivan, A.M., Lakoma MD, Block SD. (2003) The status of medical education in end-of-life-care. J Gen Intern Med. 2003: 18 (9): pp.685-695.
