Influencer Interview Series With Dr. Lydia Dugdale

Describe Your Path Within Medicine That Led You To Examine Modern Attitudes Towards Death And Dying?

I remember as a medical student standing in the intensive care unit (ICU) in total awe at how our technology can thwart and even reverse death. I remember listening to an attending physician talk with the medical team about a patient who was essentially dead, but whose family insisted we “do everything,” so we had to. After having worked in hospitals in rural Haiti and Eritrea, I remember being shocked that Americans were so willing to extend a dying life seemingly indefinitely when otherwise healthy Haitian or Eritrean patients were dying of pneumonia for lack of a basic mechanical ventilator. These experiences as a trainee had a huge impression on me. And they didn’t go away once I became a full-fledged doctor. I suppose my commitment to thinking about how we might die better stems from the same reason I became a doctor – a desire to reduce suffering. First, do no harm.

What Important Factors Along This Pathway Nudged You Towards Writing Your Book, The Lost Art Of Dying?

I am a primary care doctor, and I believe in prevention. I have had hundreds of conversations with my patients over the years on the need to prepare for death. But what we can accomplish during an office visit is never enough; time is limited. And some of my patients still die poorly. I wrote the book to give them a reference guide for thinking in advance – that is, now, while they have their wits about them – about how to live well in order to die well.

Do You Think Having This Collective Experience With The COVID-19 Pandemic Will Change The Way Our Culture Views Death And Dying?    

Honestly, I had hoped so. I finished my book The Lost Art of Dying more than a year before the pandemic hit the United States. The book builds on the notion of the ars moriendi or “art of dying” handbooks on the preparation for death that developed during the aftermath of the mid-fourteenth century Bubonic Plague outbreak. I could never have foreseen releasing a book on how plague should prompt us to think about death during our own plague year.

Yet my impression has been that we remain far more interested in talking about treatment and cure (neither of which is guaranteed) than we are in talking about death (which is guaranteed). I have been somewhat disappointed to find that with more than 3.2 million COVID-19 deaths worldwide, there is still a collective resistance.

You Make Some Enlightening Comparisons Between The COVID-19 Pandemic And The Black Plague- How Do We Move Towards Creating A Broader Support System Around Preparing For The Dying Process And Our Eventual Death?

The book discusses so much, but for the sake of this interview, I’ll emphasize a few points that derive directly from the late medieval ars moriendi handbooks. First, we need to think hard about who constitutes our community. One way to do this is to imagine who is attending you at your deathbed. What is the state of those relationships now? With whom do you need to reconcile? In what ways can you go deeper? For some, this notion of community means blood relatives or immediate family. For others it can be friends, neighbors, or fellow members of a civic organization.

Once you’ve identified who makes up your community, it’s important to engage them on life’s so-called Big Questions. What gives life meaning for you? What is life for? What rituals or practices mark the passing of time or lead to a good dying process? These are questions that traditionally had well-defined cultural or religious answers. And in our diverse communities, that may not necessarily be the case. But that doesn’t mean we don’t work toward these questions and answers through discussions with those we love.

The final way we might move toward building a broader support system is by engaging with our medical teams as extensions of our communities. Whether you see a primary care doctor once a year or have regular visits for chronic or life-threatening diseases, it’s important to talk with health professionals about how medical technology can thwart death in helpful and unbeneficial ways. Communities need to understand what CPR, DNR, intubation, and dialysis mean and their potential impact on an individual’s living and dying.

How Do You Think Advance Care Planning Can Help Individuals Create And Share A Narrative Around Their Death? 

Advance care planning – that is, formalizing one’s wishes with regard to the application of medical technology at the end of life – can be enormously helpful in facilitating conversations about goals of medical care within communities and between patients and clinicians. The most basic of advance care planning documents is the so-called “DNR” order, which stands for Do Not Resuscitate.

A wide range of people might wish to sign a DNR order, including those with chronic or incurable illnesses or those who feel they’ve lived a full life and don’t want to linger in the hospital. A person with incurable widely metastatic cancer, for example, would not benefit in any sustained way from resuscitation. Although cardiopulmonary resuscitation (CPR) might thwart death for hours in such an individual, it would inflict substantial emotional and physical suffering. However, I have had patients whose narrative has been, “I’m a fighter, and I will fight until the end.” A DNR order for such patients is out of the question, but taking the opportunity to discuss this need to fight within the context of community helps others to understand the patient’s story.

As a side note, it is worth emphasizing that people who have had unfavorable experiences with health care systems might be reticent to sign a form declining treatments. For example, a woman who feels that doctors pressured her to remove her elderly mother from a mechanical ventilator thereby hastening her death, might understand any advance care plan as a death sentence. Advance Care Planning should facilitate conversation, not place undue pressure to complete a document.

How Does Creating And Communicating A Plan Before We Need It Help Us Live With Serious Illness?  Does It Help To Address Our Inherent Fear Of Dying? 

The more we talk with those we love about how we want to live now, even as we look ahead to our deaths, the more this mitigates our fear of death. Some people who think about death a great deal aren’t afraid of it. Or if they have misgivings, they are manageable. But I’ve taken care of patients who all but plug their ears at the suggestion of discussing end-of-life wishes. In my book I talk about how we need to walk toward the fear and sadness in the company of trusted relationships. By walking toward that which we dread, we don’t necessarily learn to accept it, but it becomes familiar in a way that makes it less scary.

For Someone Living With A Serious Illness- What Is The Most Important Conversation To Have That Helps Them Understand The Concept Of Dying Well?

I love questions like this, because I get to push back and say, “We all live with serious illness! We will all die!” These statements are not intended to minimize the difficulty of living with a terrible illness, but they are to underscore the point that all of us need to be thinking about living well in order to die well.

The most important conversation to have now starts with this question: “If you were to die next year … next month … next week, what do you need to do to prepare?” It’s worth considering the question in the short-term, intermediate, and longer-term. There are legal and financial matters to consider, of course. Does your partner know your passwords? Have you named your beneficiary? Have you written a will? There are bucket list-type considerations. There are questions of religious or existential beliefs to work out. And there are relational questions. In my book, I write this:

The palliative-care doctor Ira Byock suggests that, in addition to arranging financial and legal matters, the dying should ask themselves about other affairs, such as, “Are your relationships also ‘in order’?” Byock notes that hospice provides a model for “relationship completion” by encouraging the dying to say five phrases: “I forgive you,” “Forgive me,” “Thank you,” “I love you,” and “Goodbye.” (p. 61)

If any of us – terminally ill or not – were to attend to these suggestions, we would be much better prepared for dying and death.

If People Would Like To Reach You Directly For Additional Information Or Assistance, Or Purchaser A Copy Of Your Book, Where Would You Direct Them?

My website contains information for purchasing the book and contacting me. Thank you!

The Art of Dying Well: Harvard Interview