The space in between

I work in the palliative care sector. I help in the care of the Dying.

Part of my job involves supporting people who are taking care of dying patients. The amazing people I work with every day have wrestle with the fuzzy space that lie between life and death, love and loss, compassion and pragmatism. Liminality, Boundaries, and Thresholds, are the tools and the challenge of our trade, and we must deal with Absolutes, Milestones, and Lines.

It’s not all doom and gloom. For an industry that deals in death, my workplace is one of the sunniest places I could ever imagine being in:

In the cramped downstairs offices of the Paediatric Palliative team, the desks of the dedicated nurses and social workers are pinned with love. Hung on their desk-boards are Nerf Blasters, gifted by a brilliant boy. One of his many hobbies. He’s gone now; fondly remembered and sorely missed. Other trinkets line the staff’s tables: gifts from families and patients that are collected over the years. The tables may be slightly dusty, but these trinkets remain pristine.

One floor up, and we are in the (slightly) larger office. It houses one of our five multi-disciplinary teams that help to care for dying adult patients across the island. Hunched over her work-space, a Medical Social Worker speaks quietly into her phone, nodding and giving sounds of affirmation as she listens to the caregiver on the other end share her story. Two tables down, one of our nurses dials a number, waits a moment, and then speaks loudly into the ear of a patient who is hard-of-hearing. She greets him jovially, asking if he had gone to the toilet and if he was eating well. An amused tone of affirmation can be heard over the other end: it’s probably the first voice he’s heard in the past couple of days.

On the same floor, the IT team flank one end of the building while admin and community outreach sit on the other. They are our lungs, our backbone, and our voice: volunteers, funds, grants, favors, and goodwill… They help us keep connected to the world, and make sure we are heard. Snacks, pictures of loved ones, and messages of encouragement are a-plenty.

Further in, the Medical Director’s office sits in one of the few rooms available. Plastered on the doctor’s cabinet – at eye-level in front of his desk – is the charming chaos of scribbles of a young girl with DIPG (A rare type of Glioma). She drew faces, smiling as they are close to each other. At the bottom-right corner, her autograph; one of the doctor’s prized possessions.

Whether it’s children, adults, or the elderly, palliative care is all about navigating the space between life and death. But, as Heidegger wrote, a person’s death can never be related to except by the person itself. Each death is different, and no-one can ever relate to or understand another’s death. What results is a fuzzy gradient between life and death, with everyone transitioning from one place to another in different ways.

The job is made even more difficult is the underlying fear that people have with drawing boundaries and threshold in the gradient. For many people, to draw a line is to admit defeat, to imply that you don’t love the dying enough to try every conceivable method.

It’s a reducing trend (thankfully), but many family members still often feel pressured to provide as much care to their loved ones as possible. But the most care does not translate to the best care: Oftentimes, it’s led to a backfire that burns away the dying’s quality of life. Medicine has always been about trade-offs: every drug, every procedure, every treatment involves you trading away some aspect of your health for another. Chemotherapy may target the cancer, but it also targets the tissue around it. The drug may dull the pain, but it also makes the patient feel trapped in an never-ending loop of drowsiness.

The reality of the situation is that what your loved one needs – more than ever in this critical space – is dignity. No matter what decision we suggest and follow, it should be with the best interest of the patient in mind. The Dignity principle remains the gold standard that all my co-worker strive to follow, a metric that we use to determine if we did a good job. We may reduce the amount of painkillers for the patient if it helps him stay lucid for his grand-daughter’s birthday. We may advise against getting that extra dose of chemotherapy that will kill more healthy cells than dangerous ones, and offer a switch to symptom-relief instead. We advise where your loved ones would want to be the most: whether that be in the comfort of their own home, or surrounded by family in the hospital.

Tying Dignity to the dying involves more than just looking out for their best interest; it is also about helping them to draw the line that defines who they are. Having boundaries, milestones, and thresholds are crucial to the well-being of both the dying and their carers. Boundaries help them know what and when is enough. Thresholds tell us when it’s time to move on to the next phase of care. Milestones give us hope and cause for celebration and appreciation. At this juncture, it is important – now more than ever – that we help the dying to keep what is left of themselves intact.

The work is uncharted territory: The people who would know best how to traverse the landscape of end-of-life care no longer speak. Our staff are working on intuition, compassion, and love, but always we are in need of more. I hope this small blurb gave people a better sense of the principle behind our work, and clear some of the misconceptions people may have about our work.

Ours is a business of hope, compassion, and warmth: We make Death’s embrace more than just loss, apathy, and cold. And it all begins with being able to draws in the space between, so that we can navigate it with sensitivity, caution, and dignity.