What is your Becker background?

I read Denial of Death about 20 years ago. I did my master’s thesis inspired by TMT, looking at whether empathy as a worldview would be a protective factor or a buffer against death anxiety. So learning about TMT motivated me to do that study, and then in turn TMT influenced my approach to social work. After finishing school, I did my first year practicum at the hospice where I currently work, and I got hooked.

How do you see Becker’s ideas about the denial of death in this field?

Wow, where to even start. Let’s start with hospice. Is there denial of death in hospice? Yes. Just because the patient is on hospice does not mean that there is not denial happening. There are some patients and families who have very open communication who acknowledge that they are no longer pursuing curative treatment and are simply living fully for the time they have left. And those tend to be very beautiful end of life experiences, where you see a lot of life review, a lot of “I’m sorry,” “please forgive me,” “this is what you mean to me,” and “I love you’s.” All this amazing communication and healing can happen, so those are incredibly meaningful and beautiful life experiences. And in those cases, there is not a lot of denial of death going on.

That being said, it is not uncommon for family members to say to us, “don’t say the ‘h’ word” (“Hospice”). Sometimes the family will say “Don’t tell mom she’s on hospice, we don’t want to worry her,” and then we go and see the patient and they say “Don’t tell my family I’m on hospice; I don’t want to worry them” [laughs]. I’m chuckling because it’s endearing. They love each other so much that they don’t want to hurt each other, or cry in front of each other. They are trying to protect one another from the pain of loss. So, sometimes our work is to bring them together and have conversations so that they can say what they need to say. It’s not always just a flat-out denial of death. I think it’s also important to remember that grief is not a linear process; people can be in denial, then bounce out of it, and then be back in denial again.

Where I see more denial is in palliative care. Palliative care is further upstream; people are still grappling with a serious illness, and they’re not necessarily at the end of life. This is a different population of patients than hospice, and there is more potential for denial because many people are still “in the fight” for a cure. It is not uncommon to work with a patient with stage 4 cancer, for example, who keeps doing chemotherapy and radiation, or the newest clinical trial, despite being very ill, who comes crashing into hospice, sick as all get out, and dies two weeks later. And it’s tough because they may have made a different decision (or not) if there had been less denial. People have different goals: some want to live as long as possible no matter what, some people focus on quality of life even if it means less time. There are studies that show that early incorporation of palliative care into a patient’s treatment can help a patient have a better quality of life, less depression, and even live longer.

…people can be in denial, then bounce out of it, and then be back in denial again.

Informed decision-making is critical. Part of what we encounter in palliative care is people with a lack of understanding of their true prognosis. And we don’t know where this comes from. I’m not a physician, but physicians tell me that prognostication can be very difficult. Is the physician not communicating in a way in which the patient can understand what the prognosis is? Is the patient not hearing what the doctor is clearly saying? It’s really very complicated when it comes to this, because hope and denial are both very powerful. Hope for a cure—the hope to live—is incredibly powerful. People can endure great suffering in the name of hope for more time.

What changes do you think need to start happening in order for end of life care to keep improving and to increase dialogue?

There are a lot of people working in palliative care and hospice who recognize the work that needs to be done and are doing it. I think what is really necessary is to normalize these discussions. I’m part of a large group of people who are trying to change the culture and normalize conversations about advance-care planning, which obviously bring up mortality. For example, when you go to your doctor for your annual check-up—this is the vision—they say let’s get your height and weight, let’s get your blood pressure, your labs, and let’s talk about your advance directive. It needs to be that normal so that when a patient is faced with serious illness, they are at least familiar with the idea of advance care planning.

Hope and denial are both very powerful…People can endure great suffering in the name of hope for more time.

Do you see this normalization as part of the death-positive movement happening in our culture, particularly among millennials?

Maybe, but I don’t see a lot of young people coming to my talks on advance care planning [laughs]. “Death positivity” is an interesting way to frame things. I don’t quite understand the term. I’m totally behind the idea of embracing mortality in order to remember to live fully. But, there’s a different flavor when you do the work that I do and there are people dying for real. I should put it this way: if you have seen someone or multiple people go through the dying process, if you have sat with patients and families, the heaviness that often accompanies that at some point just conflicts with the word positivity. But, reminding ourselves about death so that we remember what life’s about and stick to our priorities, that I fully support.

All of the activity that is happening around death cafes, conferences, and death positivity is great because it’s getting people talking about mortality. At least talking about it in theory. My hope is that by talking about mortality in theory, people will have an expanded comfort level with the topic. Then when someone has to face mortality in real time, when they’re tapped on the shoulder by death or by very serious illness, the topic won’t be completely foreign. People will then have professionals with the time and expertise within the medical system to create space for them to have practical conversations about it.