Ask yourself: If you knew for sure that you only had one month to live, what would you want? What would you do? What would your family do?
Some of us would try to live as fully as we could in the time we had left. Cross items off that bucket list. Gather with those who mean the most to us, show them how much we love them, and finally let ourselves feel their love too. Or, released at last from ceaseless striving, simply settle into the here and now.
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What you probably wouldn’t want is to spend that month in physical and emotional discomfort, sleeping in strange beds, only sporadically seeing those closest to you.
Too often, though, that’s exactly what happens. Patients and their loved ones hold out hope that further treatment will help. This interest aligns with that of doctors, who are keen to propose yet another treatment or a medication in a clinical trial, and loath to discuss prognosis. And so terminally ill people spend their precious final days in hospitals and clinics, away from what matters most to them.
This is why many patients and their families experience a sense of relief at being told that they do not have much time left. It may seem counterintuitive, but the news can pull a lot of weight off their shoulders.
Shrouded truths, it turns out, pose a greater threat than does death’s inevitability. No longer struggling with doubt or confusing signals from experts, they can be fully honest about what is actually happening and how they feel about it. They finally have the mental space to consider how they want to play out their lives, where and with whom, doing things that bring moments of joy, or peace, or meaning, or simply less struggle.
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But to get there, one needs to be in uncommon communication with their doctors, with themselves, and with their loved ones.
Treating diseases, not humans
Healthcare was designed to treat injury and disease. This is, of course, an extraordinarily laudable goal, but it means that the medical system isn’t centered around the patient’s experience, or around the human experience at all. The person, with all their quirks and loves and opinions and personality, becomes secondary.
While harboring the very best of intentions to help patients, doctors will often err on the side of treating, even when treatment is unlikely to help. It is difficult for clinicians to see what is lost with this approach. After all, doctors are human beings too, and extremely busy ones at that, and they are just as apprehensive about the topic of death as we all are. And, sadly, importantly, medical education simply does not train them to have these difficult conversations, or how to acknowledge and navigate the limits of medical science.
Intent on doing something, the system barricades itself from what will certainly eventually be. Indeed, wanting to preserve hope is the main reason physicians give for not always leveling with patients and families.
But this reveals an unhelpfully simplistic view of hope. It only steals time from the patient, keeping them focused on getting “better,” rather than on truly living the days they have left. It also denies the patient the basic human right to frame what it is they hope for, a crucial difference between hope as a source of healing versus hope as a source of regret.
Wielding hope more carefully
It is thus high time to revisit the organizing principles of healthcare.
While doctors want nothing but the best for their patients, they are up against complex flaws in these systems, chief among them a lack of training in communicating with patients or families, along with a severely reduced, medicalized view of emotion and grief. Doctors will only have access to better tools if we evolve the approach of the healthcare system from a focus on disease to a focus on the persons living with it.
But as individuals, we don’t need to wait for healthcare to be reformed. We can choose now to change our relationship to our own mortality, to face the inevitability of death in a realistic and loving way.
Patients have more power than they know. Ultimately the decision of whether to hope, or rather what to hope for, rests with each of us.
Hope is a powerful force, and it is important to seek it wherever it can be honestly found. Just beware of false hope; it can do real harm by kicking the can of pain down the road, compounding heartache, not relieving it.
Each of us gets one life, and every life contains its own death. Engage with that fuller picture, wield hope carefully, and then, from everything this hospice doctor has seen, you will be OK, made whole by the time death rolls around, rather than pulled apart by it.
Photo: LPETTET, Getty Images
BJ Miller is an American physician, author, and speaker who helps patients and families face illness and death realistically, comfortably, and on their own terms. Miller is cultivating a model for palliative care organizations around the world, and emphasizing healthcare’s quixotic relationship to the inevitability of death. He is a practicing hospice and palliative medicine physician and is best known for his 2015 TED Talk, "What Really Matters at the End of Life". He sees patients and caregivers through his online palliative care service, Mettle Health, a company he co-founded with the aim to provide personalized, holistic consultations for any patient or caregiver who needs help navigating the many practical, emotional and communication issues that come with serious or chronic illness, end of life and disability. BJ is also a Compassion Advisor at Empathy, a comprehensive platform helping families navigate the emotional and logistical challenges of losing a loved one.
