Transforming the last chapter of life

Transforming the last chapter of life

We stand in dappled light in a verdant field, taking photographs for the website for our new company: Alignd. The photographer’s name is Clare. She is tall, soulful, coaxing us to step forward and to claim our place: We’re here to drive much needed change in our healthcare system; We have a bold vision for a new world based on trust and accountability, where the patient is paramount.

Where do you start in a system where so many things are broken? We chose to start with patients with advanced or metastatic cancer who are at the end of life. Cancer is the second leading cause of death globally – accounting for 8.9 million deaths in 2016. In South Africa, cancer incidence is above the global average (age-standardised) and rising.

How we die is central to what it means to be human. How patients die in our health system reflects our values. The picture in the mirror isn’t pretty. In the mirror I see my friend’s beautiful son wired up to machines in paediatric ICU. If he had to be taken from this world, he should have died in her arms. I know what a hospital death looks like – an invasion of drips and nodes, the incessant beeping of panicked machines, the ominous smell of antiseptic. This isn’t the death I want for myself or for those I love most. Research indicates that I’m not alone: most patients with advanced cancer would prefer to die at home.

Clare tells us a story of hope, of her recently passed dad, who died at home, surrounded by loved ones. She tells us how they were able to let him go, cheer him over to the other side. She tells us that he had the best kind of death, a death that frees her to grieve him without the trauma of wishing it could have ended a different way.

Right now, chances are, your medical scheme will pay for costly in-hospital care but won’t pay for home-based care. Healthcare costs in the last year of life are more than three times higher than in the second last year of life. This ramping up of cost represents the huge efforts to stave off death, efforts that are often invasive, non-beneficial and ultimately futile.

We have developed a way to make it possible for patients to have meaningful conversations about the end-of-life, to document their preferred place of care and death, and to have access to palliative care delivered by an inter-disciplinary team. These are additional benefits, for those patients wanting to broaden their range of options and to be empowered to make choices at a time of when it often feels like we are stripped of autonomy.

The word palliate means “make (a disease or its symptoms) less severe without removing the cause”. Palliative care almost by definition puts the patient at the centre of the care being delivered. It is necessary to really hear what the patient’s preferences are, to see the patient in their human wholeness (physical, emotional, spiritual) and to see them in their context. So often the health system overrides our voices as patients, the quest to cure shouting louder than we do. Palliative care isn’t just about end-of-life care, even though that is what our product focuses on. It’s a philosophy of care that is increasingly relevant in a world with a rising burden of chronic illness, where living alongside disease is increasingly likely.

Palliative care doesn’t stand in opposition to curative care, the two often co-exists side-by-side. Perhaps because there is almost always a need for inter-disciplinary care (palliative teams are often made up of palliatively trained nurses and doctor, social worker or psychologist and spiritual counsellor), a need for relief and a need for healthcare providers trained in the art of having conversations about what matter most to us, in life and in death.

Making palliative care more accessible isn’t easy. It requires grappling with a complex system, and answering some of the trickiest questions: how do we build trust between funders of healthcare and those on the frontline delivering care, how do we enable co-ordinated care in a fragmented system, how do we encourage team work in a system that favours siloed care, how do we make sure that the nexus of the system is the patient? The solution is series of carefully designed pieces that slot together: working with medical schemes to design a meaningful palliative benefit, working with palliative practitioners to articulate what good care means, cultivating a neutral space in the contested ground between schemes and doctors where the first tendrils of trust can emerge and crafting social covenants that return us to a place of ultimate accountability to the patient. This new way of contracting for healthcare is made possible by advances in analytics and the clever use of new technologies but is, more than anything, deeply heartfelt and human.

Our product is on the frontline of a global movement towards what is called value-based contracting. Our solutions are complex on the inside and deeply thought through in the design process, but for funders, providers and patients they are simple to implement. We have made sure that there is coherence between benefit design, provider contracting, the patient interface, the supporting data analytics and the value-based payment mechanism. A value-based payment mechanism rewards doctors for doing the right thing – shifting us away from paying for volume towards paying for quality. And what we find feels like the illusive gold at the end of the rainbow: better outcomes for patients and their families, lower costs of care and increased autonomy for the providers of care.

¹ Discovery Health, 2018, Healthcare Claims Tracker: a Focus on Oncology Claims.
Thomas, C., et al. (2004). “Place of death: preferences among cancer patients and their carers.” Social science & medicine 58(12): 2431-2444.


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