#354 – What the dying can teach us about living well: lessons on life and reflections on mortality | BJ Miller, M.D. and Bridget Sumser, L.C.S.W.
Dr. BJ Miller and Bridget Sumser share insights from decades in end-of-life care. They discuss the realities of dying, cultural barriers to discussing death, and how engaging with mortality earlier can lead to greater clarity and a more fulfilling life.
Deep Dive Analysis
17 Topic Outline
Introduction to End-of-Life Care and Guest Backgrounds
BJ Miller's Personal Story and Path to Medicine
Bridget Sumser's Personal Journey into End-of-Life Care
Physiological and Emotional Realities of Dying
Historical Perspectives on Death vs. Modern Experiences
Distinction Between Palliative Care and Hospice Care
Systemic Challenges: Delayed Hospice Referrals and Home Care Burden
Cultural Aversion to Discussing Death and Its Consequences
Palliative Care in Oncology: Early Engagement and Misconceptions
Palliative Care in Alzheimer's Disease: Planning and Family Support
Importance of Advance Directives and Medical Decision-Making
Dying from Cancer: Differences Between Young and Old Individuals
Distinguishing Between Physical Pain and Emotional Suffering
The Role of Honesty and Connection in Dying Well
Impact of Psychedelics on End-of-Life Experiences
Lessons from the Dying on How to Live More Fully
The Physical Process of Active Dying and Loved Ones' Role
5 Key Concepts
Palliative Care
A medical specialty focused on providing holistic care for individuals with serious illnesses, aiming to improve quality of life for both the patient and their family. It can be provided alongside curative treatments and does not require a terminal prognosis.
Hospice Care
A subset of palliative care specifically for the final months of life, typically when a patient has a prognosis of six months or less if their illness runs its natural course. It requires giving up curative-intended treatments and focuses entirely on comfort and quality of life.
Delirium at End-of-Life
A common state of altered mental status in dying individuals, characterized by confusion, disorientation, and sometimes agitation (hyperactive) or silence (hypoactive). It's important for loved ones to understand that statements made during delirium are not truly representative of the person's self.
Pain vs. Suffering
Pain is a physiological stimulus or sensation, which can often be managed with medication. Suffering is a broader, mosaic experience encompassing physical, emotional, spiritual, and existential distress, often arising when pain or other symptoms threaten one's identity or sense of self.
Advance Directive
A legal document that allows individuals to make decisions about their medical care in advance, particularly if they become unable to communicate their wishes. It typically designates a healthcare proxy to speak on their behalf and outlines preferences for end-of-life care.
8 Questions Answered
As a body approaches death, it typically undergoes a shutting down of organ systems, often starting with increased fatigue and sleep. Interest in food and fluid diminishes as the GI tract slows, and mental status can become fuzzy or delirious. In the final days, skin may show mottling, and breathing patterns change, sometimes with long pauses or a gurgling 'death rattle'.
Palliative care is a broad medical specialty focused on improving quality of life for anyone with a serious illness, regardless of prognosis, and can be received alongside curative treatments. Hospice care is a specific type of palliative care for individuals with a prognosis of six months or less, requiring them to forgo curative treatments in favor of comfort-focused care.
Patients often enter hospice late due to a misunderstanding of what palliative care is (conflating it with dying), an underestimation by healthcare providers of the relational work involved, and a general shortage of trained palliative care professionals. Physicians may also delay discussions about hospice, and patients/families may be in denial or unwilling to stop curative treatments.
Home hospice care places a huge burden on family caregivers because it typically does not cover full-time support, meaning families are responsible for the vast majority of care (at least 23 hours a day). There is little to no reimbursement for caregiving, and hiring private caregivers is very expensive, leading to burnout and sometimes forcing patients back into acute care settings.
From a medical standpoint, most physical pain and discomfort can be managed at the end of life, potentially through the use of potent opioids and other medications. If symptoms are severe enough, palliative sedation can be used to induce sleep, ensuring comfort, though this means the patient may not be fully conscious.
Physical pain is a bodily sensation that can be addressed pharmacologically. Emotional and existential suffering, however, is a deeper, more complex experience that arises when symptoms or the dying process threaten one's identity, sense of self, or reality. It encompasses fears, regrets, grief, and spiritual questions, even when physical pain is well-managed.
Common regrets often revolve around not being true to oneself, not allowing oneself to feel emotions, or creating wedges between oneself and loved ones. Essentially, people regret not fully embracing their authentic self and experiences, or holding onto grudges and fears unnecessarily.
To live more fully and prepare for death, individuals should cultivate self-honesty, dare to look at themselves truly, and develop a relationship with uncertainty and the present moment. By practicing connection, forgiveness (especially self-forgiveness), and adapting to what cannot be controlled, one builds the capacities to navigate life and death with greater peace.
32 Actionable Insights
1. Live the Way You Wish to Die
Cultivate the habits, relationships, and mindset you desire for your death now, as people tend to die as they have lived; this builds the necessary ‘muscles’ for the end of life.
2. Practice Radical Self-Honesty
Dare to know yourself over time, looking at all parts of yourself, including fears and blind spots, to live a richer life and be ready to ‘die well’.
3. Cultivate Awareness While Alive
Develop deep emotional, spiritual, and relational awareness while alive, as this profoundly shapes your experience of dying.
4. Integrate Dying and Living
Recognize that dying and living are not at odds but are part of a continuous whole, encouraging a more integrated perspective on existence.
5. Contemplate Mortality While Healthy
Engage with the reality of your own mortality when you are healthy and feel good, as this builds a ’life-giving muscle’ for grappling with life’s uncertainties.
6. Practice Radical Acceptance of Emotions
Learn to accept everything within yourself, including fear, regret, and even suffering, which helps to ‘defang’ these difficult emotions and foster peace.
7. Reframe Fear and Regret
Change your relationship with fear and regret, understanding them as natural parts of being human rather than something to be ashamed of or run from.
8. Be True to Your Feelings
Avoid the common regret of not letting yourself feel or not being true to what you actually felt; express your true self and feelings to prevent wedges between yourself and loved ones.
9. Prioritize Connection
Actively foster connection to yourself, your environment, and the people around you, as this promotes ‘beautiful experiences’ during dying, regardless of mental clarity.
10. Practice Serenity Prayer’s Wisdom
Discern what you can control, what you can influence, and what you must surrender, building flexibility and learning to sit with what you cannot control.
11. Live in the Present Moment
Stay tethered to the reality that ’tomorrow is not promised,’ using this awareness to live tenderly, align actions with values, and appreciate the present moment.
12. Express Core Sentiments
Make an effort to say ‘I love you,’ ‘I forgive you,’ ‘Please forgive me,’ and ‘Thank you’ aloud to loved ones, as these are powerful for connection, reconciliation, and closure.
13. Seek Reconciliation, Avoid Grudges
Pursue reconciliation and avoid holding grudges, as these actions prevent unnecessary suffering for yourself and others.
14. Define Quality of Life Personally
Clearly articulate what ‘quality of life’ means to you, as this highly personal definition should guide all care decisions.
15. Prioritize Quality of Life
Make quality of life the central focus of your healthcare decisions, whether in palliative care or hospice, rather than solely quantity of life.
16. Prepare for Death Independently
Understand that the healthcare system’s default is to prolong life, and you may need to actively decline interventions to achieve a peaceful death aligned with your wishes.
17. State End-of-Life Wishes Explicitly
Clearly document and communicate your end-of-life wishes to avoid unwanted medical interventions that prioritize a pulse over quality of life.
18. Create Advanced Directive at 18
Complete an advanced directive as soon as you are 18, as this crucial document ensures your wishes are known and alleviates burden on loved ones.
19. Designate Medical Decision Proxy
Appoint a trusted individual as your medical decision-maker (proxy) to speak on your behalf if you become unable to communicate your wishes.
20. Discuss Wishes with Proxy Thoroughly
Have deep, ongoing conversations with your designated proxy to ensure they fully understand your values, desires, and what you want and don’t want for your care.
21. Revisit Advanced Directives Regularly
Recognize that your wishes and capacity for adaptation can change; regularly review and update your advanced directive and end-of-life plans.
22. Focus Planning on Desired Experiences
Frame end-of-life discussions around desired experiences and what brings meaning (e.g., being at home, hearing loved ones’ voices), rather than just listing interventions to avoid.
23. Adopt ‘Allow Natural Death’ Language
Consider using ‘Allow Natural Death’ (AND) instead of ‘Do Not Resuscitate’ (DNR) to shift the focus from what not to do to what is desired in end-of-life care.
24. Manage Physical Symptoms
Prioritize the management of physical symptoms like pain and nausea, as reducing this ’noise’ creates space to address emotional, spiritual, and existential suffering.
25. Clarify Opioid Use in Care
Discuss any fears or biases regarding opioid use with your care team, understanding that they are used judiciously for symptom management, not euthanasia or addiction, at the end of life.
26. Understand Delirium in Dying
Be aware that delirium is common at the end of life and can cause loved ones to say things that are not literal; understanding this can prevent unnecessary suffering for family.
27. Discuss Delirium Management Preferences
If facing end-of-life, discuss with your care team whether you prefer delirium to be medicated (e.g., for sleep) or allowed to express itself, aligning with your personal wishes.
28. Challenge ‘Perfect Death’ Notion
Let go of the expectation of a ’tidy,’ ‘immaculate,’ or ‘perfect’ death, as dying is often a messy and complex process; accepting this can reduce unrealistic expectations.
29. Ask Caregivers About Experience
Remember to ask family members and care partners how they are doing, as they often carry a significant burden and may feel unseen and unheard.
30. Take Breaks from Bedside Vigil
Caregivers should prioritize their own basic needs (sleep, food, walks) during a vigil, as stepping away may not only help them but also allow the dying person to let go.
31. Allow Dying Loved Ones Solitude
Be open to the possibility that a dying loved one may need to be alone in their final moments to ’let go,’ and stepping out of the room might be what they need.
32. Advanced Directives Without a Lawyer
Note that you do not need a lawyer to complete an advanced directive, making this important planning tool more accessible.
5 Key Quotes
Bodies die, living things die. I think a lot of us absorb a notion of death that it's some foreign invader or something that comes out of the woods and grabs us. And otherwise I was just fine and then not. No. And as you know better than any of us, there are all sorts of things we can do to promote life. And there are a lot of ways we're wired to hang on to life and to run from anything that's a threat to us. Those are all true and all natural, but included on the list of natural things that we do is die. That's what a body's supposed to do. I just want to get that clear. There's nothing wrong with you for dying. This is the way it's supposed to go.
BJ Miller
Dying can't always be, shouldn't perhaps, maybe to use that hard word, be so tidy and immaculate and clean and perfect. I want to disabuse, I think we'd both like to disabuse that notion of that that's a good death, a quiet death.
BJ Miller
We don't tend to anticipate our ability to adapt very well, especially when like the worst case thing is happening. Sometimes having been intimately involved in this worst case thing, you surprise yourself or your kids surprise, you know, there's these things that unfold that you wouldn't have guessed would be a part of the experience.
Bridget Sumser
If you want to be ready to die well, get real with yourself, the sooner the better, because one of the things you'll allow in is a richer life.
BJ Miller
There's not a lot of truisms in this space that I generally vibe with, and I'm pretty allergic to most of them. But I will say that I do think there's something to like people die the way that they live.
Bridget Sumser
1 Protocols
Preparing Loved Ones for the Final Moments of Active Dying
BJ Miller & Bridget Sumser- Recognize that the dying person's body is actively shutting down, with symptoms like decreased urine output, fuzziness/sleep, mottled skin, and altered breathing patterns (e.g., death rattle).
- Understand that the 'death rattle' sound is due to dying reflexes and typically not felt by the person dying, making it harder for observers than the patient.
- Prioritize basic needs and comforts for everyone in the space, including caregivers, to avoid burnout (e.g., sleeping, eating, taking breaks).
- Give permission to loved ones to step away from the bedside (e.g., to go to the bathroom or take a walk), understanding that the dying person may need to be alone to let go.
- Communicate love and say goodbyes, knowing that the person may pass in your absence, and that this might be what they needed to finally release.