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

Introduction

In this section, the speaker introduces himself and shares his experience of being electrocuted with 11,000 volts.

• The speaker shares that he was electrocuted with 11,000 volts in college.

• He explains that the incident began his formal relationship with death and made him a patient.

• The speaker highlights that healthcare does not always serve patients well.

Necessary Suffering

In this section, the speaker discusses necessary suffering and how it unites caregivers and care receivers.

• The speaker distinguishes between necessary suffering and unnecessary suffering.

• He emphasizes that necessary suffering is an essential part of life and brings proportionality to our experiences.

• The speaker notes that necessary suffering unites caregivers and care receivers.

Bad Design

In this section, the speaker discusses how healthcare was designed with diseases at its center rather than people.

• The speaker explains that healthcare was badly designed because it was centered around diseases instead of people.

• He notes that bad design leads to unnecessary suffering for patients.

Redesigning How We Die

In this section, the speaker talks about redesigning how we die by bringing intention and creativity to the experience of dying.

• The speaker emphasizes the importance of rethinking and redesigning how we die as a society.

• He suggests using design thinking to bring intention and creativity to end-of-life care.

• The speaker notes that making the system sensitive to the distinction between necessary and unnecessary suffering is crucial.

Healing Through Compassion

In this section, the speaker discusses how compassion can help relieve unnecessary suffering.

• The speaker notes that compassion involves suffering together.

• He emphasizes that unnecessary suffering in healthcare systems can be changed.

• The speaker highlights the importance of relieving suffering as a key role for caregivers.

Palliative Care

In this section, the speaker talks about palliative care and its importance in end-of-life care.

• The speaker explains that palliative care is not limited to end-of-life care but includes all stages of serious illness.

• He notes that palliative care focuses on relieving symptoms and improving quality of life for patients.

Palliative Care and Shifting Perspectives

In this section, the speaker introduces the concept of palliative care and shares a story about a patient named Frank. The speaker emphasizes the importance of shifting perspectives when it comes to end-of-life care.

Introduction to Palliative Care

• Palliative care can benefit anyone, not just those who are dying soon.

• The speaker has been working with a patient named Frank for years who is living with advanced prostate cancer and HIV.

Frank's Story

• Frank and the speaker work together to manage his bone pain and fatigue.

• They also spend time discussing life and loss, allowing Frank to grieve in his own way.

• Despite facing many losses, Frank is an adventurer who does not want to live with regret.

• He decides to go on a rafting trip down the Colorado River despite the risks to his health.

• The trip is glorious and allows him to experience all the beauty that life has to offer.

Shifting Perspectives

• The speaker discusses how changing his major to art history helped him learn how to see things differently after his accident.

• At the Zen Hospice Project where he works, they have a ritual when someone passes away that involves sharing stories or songs as they sprinkle flower petals on the body.

• This helps shift perspective from grief with warmth rather than repugnance compared to typical hospital settings where patients are whisked away without any ceremony or acknowledgement of their existence.

• Hospitals are designed for acute trauma and treatable illness but are not ideal places for people to live or die.

• While hospitals can become more humane, we need a shift in perspective towards beauty in order for this change to happen.

The Need for Infrastructure to Handle Seismic Shifts in Our Population

In this section, the speaker discusses the need for infrastructure that can handle seismic shifts in our population due to an increase in chronic and terminal illnesses as well as an aging population.

Key Points:

• Many people are ready to die not because they have found peace or transcendence but because they are repulsed by what their lives have become.

• There is a record number of people living with chronic and terminal illness, and we are not prepared for this silver tsunami.

• We need an infrastructure dynamic enough to handle these seismic shifts in our population.

• The key ingredients for creating such infrastructure include policy, education and training, systems, bricks and mortar.

Prioritizing Comfort and Sensory Experience at End of Life

In this section, the speaker emphasizes the importance of prioritizing comfort and sensory experience at end-of-life care.

Key Points:

• Research shows that what's most important to people who are closer to death is comfort; feeling unburdened and unburdening to those they love; existential peace; and a sense of wonderment and spirituality.

• Little things aren't so little when it comes to end-of-life care. For example, Janette wants to start smoking again just so she can feel her lungs filled while she has them.

• Sensuous, aesthetic gratification is crucial at end-of-life care. It allows us to love our time by way of the senses - the very thing doing the living and dying.

• Providing sustenance on several levels, such as smell and a symbolic plane, is important in end-of-life care. For example, baking cookies can be one of the most effective interventions.

Making Life More Wonderful Rather Than Less Horrible

In this section, the speaker discusses how we need to lift our sights and set our sights on well-being so that life and health care can become about making life more wonderful rather than just less horrible.

Key Points:

• We need to tend to dignity by way of the senses - the aesthetic realm.

• We need to set our sights on well-being so that life and health care can become about making life more wonderful rather than just less horrible.

• Dying is a necessary part of life, and we should make space for it to play itself all the way out. Aging and dying can become a process of crescendo through to the end.

• Play is one of our highest forms of adaptation. By allowing life to play itself all the way out, aging and dying can become a creative, generative, even playful act.

Working on Life

In this section, the speaker talks about how we can find beauty and meaning in life even when parts of us have died.

Redesigning Life

• The speaker shares that parts of them died early on, and they had to redesign their life around this fact.

• They found it liberating to realize that you can always find a shock of beauty or meaning in what life you have left.

• If we love such moments ferociously, then maybe we can learn to live well -- not in spite of death, but because of it.

Embracing Imagination

• The speaker encourages us to let death be what takes us, not lack of imagination.