Design can also help by facilitating conversations around end-of-life care.
Bite Size Future is a conversation toolkit that The Care Lab team developed in partnership with St Joseph's Home and the Lien Foundation to help find the words to share what someone might be feeling, wishing or fearing at the end of their life.
Essentially, a family member and resident are invited to afternoon tea with a social worker or hospice nurse, where a cookie is paired with a card that contains a question relating to end-of-life choices for the patient.
Oasis@Outram is taking this a step further by having a dedicated Conversation Room decked out with warm, inviting decor and furniture where such conversations using these toolkits can be held.
My team at The Care Lab have also designed service rituals for care professionals to offload their own emotional baggage, so that they have the headspace to hold a good conversation with a family member, resident or patient.
Photo: Lien Foundation, Ang Chin Moh Foundation and fuelfor/The Care Lab.
This is delivered as a kind of board game that teams can use in a group workshop to discuss, in a structured manner, their reflections on what happened in the past week or month, sharing the challenges or joys they have experienced.
It helps by normalising the highs and lows of their job, and provides a safe space for stress to be released, and for solidarity and community to flourish.
Death as part of life
Dying is not defined by time, age or disease. I see end-of-life as a distinct life stage, apart from when it is unforeseen, and that explains why I regard it as an experience in and of itself.
The focus of care shifts away from being curative towards the quality of life and the significance of human relationships.
Palliative care professionals and geriatricians are specialists in dealing with end-of-life issues. I have learnt by working alongside them for almost 10 years that it is about listening carefully to what matters for each patient.
That, in itself, is challenging, since in the spirit of filial piety, many families feel obliged to take control and, fuelled by their own natural fears and anxiety, may even take it a step too far in their care, resulting in the patient's voice and preferences getting drowned out.
Challenges are also found in the physical environments of the institutions looking after people at the end-of-life stage.
While families are encouraged to participate in the caring of their loved ones, facilities are not always equipped with good options for them to stay comfortably.
Residents then often end up in rooms that feel institutional, with poor lighting and little or no personal space - not well-suited to their needs in this final and important life stage.
Not to be neglected either are the caregivers - the close friends and family members - delivering day-to-day care, who can be "hidden patients" themselves given the adverse mental and physical consequences they face from demanding caregiving work on top of their existing work, financial and family responsibilities.
Interventions designed to help the caregiver become more competent and confident are essential to ensure that their loved one receives loving, safe and consistent care. For instance, a caregiver in a positive state of mind and equipped with the right practical skills can identify problems for their loved one before they turn into a crisis, better alleviate their fears and frustrations and become advocates for their end-of-life wishes, as well as being able to practise self-care and avoid their own caregiver burnout.
End-of-life care should be positioned in the same way that we celebrate and support newborn babies and their parents - with compassion, a strong focus on the person and their family, and free of societal taboos. For instance, we announce our births in our communities with unabashed pride and joy, and that is an approach we can seek to emulate when speaking about our preferences at the end of life.
Good design can contribute significantly to this reset. I believe it can help us all to reframe this life stage to be experienced as a personal moment of reflection and peace for the individual and everyone involved; to remember, honour and celebrate a life lived.
If our relationship with death and dying can be repositioned to be one of positivity despite the pain, it can provide us with an even greater appreciation of life, while instilling a sense of calm about a subject so fundamental to our existence.
I share this idea at every available opportunity, as part of the reset we are trying to redesign with end-of-life care in Singapore and beyond.
When people stop walking away from me when I tell them what I do, then I know we may just have succeeded.
Lekshmy Parameswaran is co-founder of The Care Lab, a design practice based in Barcelona, working internationally to transform systems of care. She received the Design of the Year accolade at the 2018 President*s Design Award (P*DA)
This article first appeared in The Straits Times here.