What really matters at the end of life | BJ Miller | TED

Summary

The speaker, a physician specializing in hospice and palliative medicine, shares a personal story of a life-altering accident and advocates for a redesign of the healthcare system to focus on patient-centered care, particularly at the end of life. He emphasizes the importance of distinguishing between necessary and unnecessary suffering, and calls for a shift in perspective that values dignity, sensory experiences, and well-being. The talk encourages embracing life fully, even in the face of death, and invites a multidisciplinary approach to improve the experience of dying.

Takeaways

• 🚫 The speaker's life-changing accident: The speaker's encounter with a high-voltage shock that led to the loss of limbs and a deep connection with the concept of death and the healthcare system.
• 🏥 Healthcare's dual nature: The acknowledgment that while the American healthcare system has its flaws, it also has moments of brilliance, and the speaker's personal experience as a physician in hospice and palliative medicine.
• 🔍 The flawed design of healthcare: The healthcare system was designed with diseases at its center rather than people, leading to a system that often fails to serve patients effectively.
• 💔 The importance of distinguishing between necessary and unnecessary suffering: The speaker emphasizes the need to alleviate avoidable suffering and the role of caregivers in this process.
• 🌟 The role of palliative care: An explanation of palliative care as not just end-of-life care but a broader approach to comfort and living well at any stage of illness.
• 🗣️ The power of storytelling: The speaker introduces Frank, a patient with cancer and HIV, to illustrate the importance of discussing life, loss, and choices with patients.
• 🎨 Perspective and the aesthetic of dying: The speaker's shift to art history as a way to learn how to see and the importance of perspective in transforming suffering.
• 🌹 The Zen Hospice Project's rituals: A description of the Zen Hospice Project's practices that foster a sense of community and warmth during the process of dying.
• 🏠 The inadequacy of hospitals for dying: A critique of the hospital environment as being ill-suited for the process of dying and the need for more appropriate spaces.
• 🌱 The sensory experience in end-of-life care: The significance of the senses and the body in providing dignity and connection to life, even when physical capabilities are limited.
• 🎉 The call to action for a human-centered model of care: The speaker's final message urging a redesign of healthcare to focus on well-being, creativity, and playfulness in the face of death.

Q & A

What was the pivotal event that led the speaker to become a patient?

The speaker became a patient after an accident during his sophomore year of college where he climbed atop a parked commuter train and was electrocuted by the overhead wires, resulting in the loss of his limbs.

How does the speaker describe the American healthcare system?

The speaker describes the American healthcare system as having a fair share of dysfunction alongside its brilliance, and criticizes it for being designed with diseases, not people, at its center.

What is the speaker's profession and how does it relate to his personal experience?

The speaker is a physician specializing in hospice and palliative medicine. His profession is closely related to his personal experience as he has seen care from both the perspective of a patient and a healthcare provider.

What is the main purpose of the speaker's talk?

The speaker's main purpose is to invite design thinking into the conversation about end-of-life care, advocating for a more intentional and creative approach to the experience of dying.

What is the key distinction the speaker makes between types of suffering?

The speaker distinguishes between necessary suffering, which is a natural part of life and something we must adjust to, and unnecessary suffering, which is avoidable and often a result of poor system design.

Can you explain the concept of palliative care as mentioned by the speaker?

Palliative care, as explained by the speaker, is about comfort and living well at any stage of life. It is not limited to end-of-life or hospice care but focuses on improving the quality of life for patients with serious illnesses.

Who is Frank and what does his story illustrate?

Frank is a patient the speaker has been seeing for years who has advanced prostate cancer and HIV. His story illustrates the importance of supporting patients in making decisions that are best for them, such as Frank's decision to go rafting down the Colorado River despite his health risks.

What is the significance of the snowball story shared by the speaker?

The snowball story signifies a moment of profound beauty and connection to life that the speaker experienced while in a hospital. It demonstrates how small, sensory experiences can have a significant impact on a patient's perspective and will to live.

What does the speaker suggest as the first design cue for improving end-of-life care?

The first design cue suggested by the speaker is to make the healthcare system sensitive to the distinction between necessary and unnecessary suffering, aiming to relieve rather than add to a patient's suffering.

What is the role of the senses and the aesthetic realm in the speaker's vision for end-of-life care?

In the speaker's vision, the senses and the aesthetic realm play a crucial role in maintaining dignity and providing a sense of connection and humanity. This includes creating environments and experiences that engage the senses and foster a sense of beauty and wonder.

What is the final design cue proposed by the speaker for rethinking end-of-life care?

The final design cue proposed by the speaker is to lift our sights and focus on well-being, transforming healthcare into a system that makes life more wonderful rather than just less horrible, and embracing a human-centered model of care.

Outlines

00:00

🚑 A Personal Journey with Healthcare

The speaker begins with a personal story of a life-altering accident involving 11,000 volts of electricity, which resulted in the loss of their limbs. This event marked the start of their relationship with the healthcare system, both as a patient and later as a physician specializing in hospice and palliative medicine. The speaker reflects on the dual nature of the American healthcare system, acknowledging its brilliance alongside its dysfunction. They argue that the system is flawed because it was designed around diseases rather than people, which is particularly evident in end-of-life care. The speaker calls for a redesign of the healthcare system, advocating for the inclusion of design thinking to improve the experience of dying, emphasizing the importance of distinguishing between necessary and avoidable suffering.

05:00

🌐 The Impact of Systemic and Personal Perspectives on Suffering

The speaker discusses the difference between necessary and unnecessary suffering, suggesting that while necessary suffering is an inherent part of life, unnecessary suffering can and should be addressed and changed. They emphasize the role of caregivers to alleviate, rather than contribute to, suffering. The speaker introduces the concept of palliative care, clarifying that it is not only for end-of-life situations but for comfort and quality of life at any stage. The narrative continues with the story of Frank, a patient living with prostate cancer and HIV, who chose to embark on an adventurous river rafting trip despite his health condition. This story illustrates the importance of supporting individuals in making choices that enhance their quality of life. The speaker also contrasts the typical hospital environment, which can be cold and impersonal, with the more compassionate and aesthetic approach at the Zen Hospice Project, highlighting the need for a shift in perspective on how we approach death and dying.

10:03

🌨 Moments of Beauty Amidst Suffering

The speaker recounts a personal experience in a burn unit where a simple act of kindness—a smuggled snowball—provided profound comfort and a renewed sense of connection to life and the universe. This story underscores the importance of finding beauty and humanity within institutional settings. The speaker argues for the creation of a more dynamic infrastructure to handle the increasing numbers of people living with chronic and terminal illnesses, emphasizing the need for policy, education, systems, and physical structures that prioritize comfort, existential peace, and a sense of spirituality. They share anecdotes from the Zen Hospice Project, illustrating how small, sensory experiences can have a significant impact on the quality of life for those nearing death, and advocate for the importance of maintaining a connection to the senses as a means of preserving dignity and humanity.

15:10

🎨 Designing for Dignity and Well-being

In the final paragraph, the speaker calls for a redesign of healthcare with a focus on well-being and a patient-centered approach. They argue that healthcare should aim to make life more wonderful, not just less horrible. The speaker introduces the concept of 'play' as a form of adaptation and creativity, suggesting that we should embrace the process of aging and dying as a natural part of life. They encourage the audience to consider how we might redesign our approach to death, allowing it to be a process of crescendo rather than avoidance. The speaker concludes by emphasizing the importance of cherishing moments of beauty and meaning, and living well because of, not in spite of, death. They advocate for a healthcare system that is imaginative and life-affirming, rather than one that is limited by a lack of creativity and compassion.

Keywords

💡Death

Death is the permanent cessation of all biological functions that sustain a living organism. In the video, death is presented as a natural part of life that everyone must face. The speaker discusses the fear of dying and the importance of designing a healthcare system that respects and supports individuals as they approach the end of life.

💡Healthcare System

The healthcare system refers to the organization of services and resources that provide medical care to individuals. The speaker critiques the American healthcare system for being centered around diseases rather than people, which often leads to a lack of personal care and unnecessary suffering. The video calls for a redesign of the system to be more human-centered and compassionate.

💡Suffering

Suffering is the state of severe pain, distress, or hardship. The video distinguishes between necessary suffering, which is an inherent part of life, and unnecessary suffering, which can be mitigated or eliminated. The speaker argues that the healthcare system should be designed to minimize unnecessary suffering, especially at the end of life.

💡Palliative Care

Palliative care is a branch of medicine focused on providing relief from the symptoms and stress of serious illnesses, improving the quality of life for both the patient and their family. The speaker, a physician in palliative care, emphasizes the importance of this field in ensuring comfort and a sense of well-being for patients at any stage of their illness.

💡Design Thinking

Design thinking is a problem-solving approach that prioritizes empathy, experimentation, and iterative learning. The speaker invites design thinking into the conversation about end-of-life care, suggesting that intentional and creative solutions can improve the patient experience and address the shortcomings of the current healthcare system.

💡Dignity

Dignity refers to the state or quality of being worthy of honor or respect. In the context of the video, dignity is closely tied to the idea of maintaining a sense of self-worth and respect for the individual's experience, especially as they face the end of life. The speaker discusses the importance of designing healthcare experiences that uphold the dignity of patients.

💡End-of-Life

End-of-life refers to the time surrounding death, often focusing on the care and support provided to those nearing the end of their life. The video highlights the unique challenges and opportunities in designing healthcare experiences for the end of life, emphasizing the importance of compassion, comfort, and a sense of wonder.

💡Sensory Experience

Sensory experience relates to the perceptions and feelings derived from the senses. The speaker discusses the importance of sensory experiences in providing comfort and a sense of connection to life, even when physical capabilities are diminished. Examples from the script include the smell of baking cookies and the tactile experience of holding a snowball.

💡Compassion

Compassion is the feeling of deep sympathy and sorrow for another's suffering, often accompanied by the desire to alleviate it. The video emphasizes compassion as a fundamental aspect of healthcare, particularly in palliative care, where the focus is on suffering together with the patient and providing emotional support.

💡Creativity

Creativity is the use of imagination or original ideas to create something. The speaker encourages the application of creativity in healthcare, suggesting that it can lead to innovative solutions for improving the patient experience, especially in end-of-life care, and can transform the way we approach dying.

💡Existential Peace

Existential peace refers to a state of inner tranquility and acceptance of one's existence and purpose. The video mentions existential peace as one of the most important aspects for people nearing death, suggesting that healthcare should aim to provide not just physical comfort but also a sense of peace and acceptance.

Highlights

The speaker's personal story of being electrocuted and how it led to a relationship with death and a long-term patient experience.

The American healthcare system's dysfunction and brilliance, and the speaker's perspective as a physician in hospice and palliative medicine.

Healthcare's design flaw: centered on diseases rather than people, leading to a system that often fails to serve.

The importance of distinguishing between necessary suffering, which is a part of life, and unnecessary suffering that can be changed.

The speaker's call to action for design thinking in healthcare, particularly in improving the experience of dying.

The concept that the fear of death is often more about the process of dying and suffering than the state of being dead.

The role of caregivers in relieving suffering and the tenets of palliative care beyond just end-of-life situations.

The story of Frank, a patient with prostate cancer and HIV, and his decision to go on an adventure to raft down the Colorado River.

The need for a shift in perspective on death and dying, drawing from the speaker's experience studying art history.

The ritual at the Zen Hospice Project that honors the dead with stories, songs, and flower petals, fostering a sense of community and warmth.

The contrast between the Zen Hospice Project's approach and the typical hospital experience, which can be impersonal and devoid of sensory comfort.

The story of the snowball in the burn unit that brought a moment of joy and connection to the speaker during a difficult time.

The importance of sensory experiences and aesthetics in providing dignity and comfort to those nearing the end of life.

The need for a new infrastructure to handle the increasing population of people living with chronic and terminal illnesses.

The key ingredients for creating a more humane and dynamic healthcare system: policy, education, systems, and physical infrastructure.

The importance of focusing on well-being and the quality of life, rather than just the absence of disease.

The concept of 'play' in adapting to the inevitability of death and creating a meaningful end-of-life experience.

The speaker's personal realization that embracing beauty and meaning in life can lead to living well, in spite of death.

Transcripts

Well, we all need a reason to wake up.

For me, it just took 11,000 volts.

I know you're too polite to ask,

so I will tell you.

One night, sophomore year of college,

just back from Thanksgiving holiday,

a few of my friends and I were horsing around,

and we decided to climb atop a parked commuter train.

It was just sitting there, with the wires that run overhead.

Somehow, that seemed like a great idea at the time.

We'd certainly done stupider things.

I scurried up the ladder on the back,

and when I stood up,

the electrical current entered my arm,

blew down and out my feet, and that was that.

Would you believe that watch still works?

Takes a licking!

(Laughter)

My father wears it now in solidarity.

That night began my formal relationship with death -- my death --

and it also began my long run as a patient.

It's a good word.

It means one who suffers.

So I guess we're all patients.

Now, the American health care system

has more than its fair share of dysfunction --

to match its brilliance, to be sure.

I'm a physician now, a hospice and palliative medicine doc,

so I've seen care from both sides.

And believe me: almost everyone who goes into healthcare

really means well -- I mean, truly.

But we who work in it are also unwitting agents

for a system that too often does not serve.

Why?

Well, there's actually a pretty easy answer to that question,

and it explains a lot:

because healthcare was designed with diseases, not people, at its center.

Which is to say, of course, it was badly designed.

And nowhere are the effects of bad design more heartbreaking

or the opportunity for good design more compelling

than at the end of life,

where things are so distilled and concentrated.

There are no do-overs.

My purpose today is to reach out across disciplines

and invite design thinking into this big conversation.

That is, to bring intention and creativity

to the experience of dying.

We have a monumental opportunity in front of us,

before one of the few universal issues

as individuals as well as a civil society:

to rethink and redesign how it is we die.

So let's begin at the end.

For most people, the scariest thing about death isn't being dead,

it's dying, suffering.

It's a key distinction.

To get underneath this, it can be very helpful

to tease out suffering which is necessary as it is,

from suffering we can change.

The former is a natural, essential part of life, part of the deal,

and to this we are called to make space, adjust, grow.

It can be really good to realize forces larger than ourselves.

They bring proportionality,

like a cosmic right-sizing.

After my limbs were gone,

that loss, for example, became fact, fixed --

necessarily part of my life,

and I learned that I could no more reject this fact than reject myself.

It took me a while, but I learned it eventually.

Now, another great thing about necessary suffering

is that it is the very thing

that unites caregiver and care receiver --

human beings.

This, we are finally realizing, is where healing happens.

Yes, compassion -- literally, as we learned yesterday --

suffering together.

Now, on the systems side, on the other hand,

so much of the suffering is unnecessary, invented.

It serves no good purpose.

But the good news is, since this brand of suffering is made up,

well, we can change it.

How we die is indeed something we can affect.

Making the system sensitive to this fundamental distinction

between necessary and unnecessary suffering

gives us our first of three design cues for the day.

After all, our role as caregivers, as people who care,

is to relieve suffering -- not add to the pile.

True to the tenets of palliative care,

I function as something of a reflective advocate,

as much as prescribing physician.

Quick aside: palliative care -- a very important field but poorly understood --

while it includes, it is not limited to end of life care.

It is not limited to hospice.

It's simply about comfort and living well at any stage.

So please know that you don't have to be dying anytime soon

to benefit from palliative care.

Now, let me introduce you to Frank.

Sort of makes this point.

I've been seeing Frank now for years.

He's living with advancing prostate cancer on top of long-standing HIV.

We work on his bone pain and his fatigue,

but most of the time we spend thinking out loud together about his life --

really, about our lives.

In this way, Frank grieves.

In this way, he keeps up with his losses as they roll in,

so that he's ready to take in the next moment.

Loss is one thing, but regret, quite another.

Frank has always been an adventurer --

he looks like something out of a Norman Rockwell painting --

and no fan of regret.

So it wasn't surprising when he came into clinic one day,

saying he wanted to raft down the Colorado River.

Was this a good idea?

With all the risks to his safety and his health, some would say no.

Many did, but he went for it, while he still could.

It was a glorious, marvelous trip:

freezing water, blistering dry heat, scorpions, snakes,

wildlife howling off the flaming walls of the Grand Canyon --

all the glorious side of the world beyond our control.

Frank's decision, while maybe dramatic,

is exactly the kind so many of us would make,

if we only had the support to figure out what is best for ourselves over time.

So much of what we're talking about today is a shift in perspective.

After my accident, when I went back to college,

I changed my major to art history.

Studying visual art, I figured I'd learn something about how to see --

a really potent lesson for a kid who couldn't change

so much of what he was seeing.

Perspective, that kind of alchemy we humans get to play with,

turning anguish into a flower.

Flash forward: now I work at an amazing place in San Francisco

called the Zen Hospice Project,

where we have a little ritual that helps with this shift in perspective.

When one of our residents dies,

the mortuary men come, and as we're wheeling the body out through the garden,

heading for the gate, we pause.

Anyone who wants --

fellow residents, family, nurses, volunteers,

the hearse drivers too, now --

shares a story or a song or silence,

as we sprinkle the body with flower petals.

It takes a few minutes;

it's a sweet, simple parting image to usher in grief with warmth,

rather than repugnance.

Contrast that with the typical experience in the hospital setting,

much like this -- floodlit room lined with tubes and beeping machines

and blinking lights that don't stop even when the patient's life has.

Cleaning crew swoops in, the body's whisked away,

and it all feels as though that person had never really existed.

Well-intended, of course, in the name of sterility,

but hospitals tend to assault our senses,

and the most we might hope for within those walls is numbness --

anesthetic, literally the opposite of aesthetic.

I revere hospitals for what they can do; I am alive because of them.

But we ask too much of our hospitals.

They are places for acute trauma and treatable illness.

They are no place to live and die; that's not what they were designed for.

Now mind you -- I am not giving up on the notion

that our institutions can become more humane.

Beauty can be found anywhere.

I spent a few months in a burn unit

at St. Barnabas Hospital in Livingston, New Jersey,

where I got really great care at every turn,

including good palliative care for my pain.

And one night, it began to snow outside.

I remember my nurses complaining about driving through it.

And there was no window in my room,

but it was great to just imagine it coming down all sticky.

Next day, one of my nurses smuggled in a snowball for me.

She brought it in to the unit.

I cannot tell you the rapture I felt holding that in my hand,

and the coldness dripping onto my burning skin;

the miracle of it all,

the fascination as I watched it melt and turn into water.

In that moment,

just being any part of this planet in this universe mattered more to me

than whether I lived or died.

That little snowball packed all the inspiration I needed

to both try to live and be OK if I did not.

In a hospital, that's a stolen moment.

In my work over the years, I've known many people

who were ready to go, ready to die.

Not because they had found some final peace or transcendence,

but because they were so repulsed by what their lives had become --

in a word, cut off, or ugly.

There are already record numbers of us living with chronic and terminal illness,

and into ever older age.

And we are nowhere near ready or prepared for this silver tsunami.

We need an infrastructure dynamic enough to handle

these seismic shifts in our population.

Now is the time to create something new, something vital.

I know we can because we have to.

The alternative is just unacceptable.

And the key ingredients are known:

policy, education and training,

systems, bricks and mortar.

We have tons of input for designers of all stripes to work with.

We know, for example, from research

what's most important to people who are closer to death:

comfort; feeling unburdened and unburdening to those they love;

existential peace; and a sense of wonderment and spirituality.

Over Zen Hospice's nearly 30 years,

we've learned much more from our residents in subtle detail.

Little things aren't so little.

Take Janette.

She finds it harder to breathe one day to the next due to ALS.

Well, guess what?

She wants to start smoking again --

and French cigarettes, if you please.

Not out of some self-destructive bent,

but to feel her lungs filled while she has them.

Priorities change.

Or Kate -- she just wants to know

her dog Austin is lying at the foot of her bed,

his cold muzzle against her dry skin,

instead of more chemotherapy coursing through her veins --

she's done that.

Sensuous, aesthetic gratification, where in a moment, in an instant,

we are rewarded for just being.

So much of it comes down to loving our time by way of the senses,

by way of the body -- the very thing doing the living and the dying.

Probably the most poignant room

in the Zen Hospice guest house is our kitchen,

which is a little strange when you realize

that so many of our residents can eat very little, if anything at all.

But we realize we are providing sustenance on several levels:

smell, a symbolic plane.

Seriously, with all the heavy-duty stuff happening under our roof,

one of the most tried and true interventions we know of,

is to bake cookies.

As long as we have our senses --

even just one --

we have at least the possibility of accessing

what makes us feel human, connected.

Imagine the ripples of this notion

for the millions of people living and dying with dementia.

Primal sensorial delights that say the things we don't have words for,

impulses that make us stay present --

no need for a past or a future.

So, if teasing unnecessary suffering out of the system was our first design cue,

then tending to dignity by way of the senses,

by way of the body -- the aesthetic realm --

is design cue number two.

Now this gets us quickly to the third and final bit for today;

namely, we need to lift our sights, to set our sights on well-being,

so that life and health and healthcare

can become about making life more wonderful,

rather than just less horrible.

Beneficence.

Here, this gets right at the distinction

between a disease-centered and a patient- or human-centered model of care,

and here is where caring becomes a creative, generative,

even playful act.

"Play" may sound like a funny word here.

But it is also one of our highest forms of adaptation.

Consider every major compulsory effort it takes to be human.

The need for food has birthed cuisine.

The need for shelter has given rise to architecture.

The need for cover, fashion.

And for being subjected to the clock,

well, we invented music.

So, since dying is a necessary part of life,

what might we create with this fact?

By "play" I am in no way suggesting we take a light approach to dying

or that we mandate any particular way of dying.

There are mountains of sorrow that cannot move,

and one way or another, we will all kneel there.

Rather, I am asking that we make space --

physical, psychic room, to allow life to play itself all the way out --

so that rather than just getting out of the way,

aging and dying can become a process of crescendo through to the end.

We can't solve for death.

I know some of you are working on this.

(Laughter)

Meanwhile, we can --

(Laughter)

We can design towards it.

Parts of me died early on,

and that's something we can all say one way or another.

I got to redesign my life around this fact,

and I tell you it has been a liberation

to realize you can always find a shock of beauty or meaning

in what life you have left,

like that snowball lasting for a perfect moment,

all the while melting away.

If we love such moments ferociously,

then maybe we can learn to live well --

not in spite of death,

but because of it.

Let death be what takes us,

not lack of imagination.

Thank you.

(Applause)