Podcast Summary: Before We Go — Episode 7: "Quality of Life"

Host: Dr. Shoshana Ungerleider
Date: November 26, 2024

Episode Overview

This episode of "Before We Go" delves into the emotional and complex realities of supporting a loved one with a terminal illness, as Dr. Shoshana Ungerleider shares her father Steven’s journey with cancer. The episode is a candid, multifaceted exploration of quality of life at the end of life—how families face hope, denial, and acceptance, how mental health is often overlooked, and the vital role of palliative care. Through personal stories and expert insights, the discussion reveals the universal challenges of making decisions and finding meaning when facing mortality.

Key Discussion Points and Insights

1. The Emotional Complexity of End-of-Life Care

• Opening Thoughts: Shoshana acknowledges the dual realities of death: "Death is a part of life and that talking about death doesn't have to be sad and it doesn't have to be depressing. But I have to be honest, taking care of someone who is seriously ill can be really, really hard." (00:00)
• Family Experience: Family members recall Steven’s dramatic personality change post-diagnosis, highlighting retreat and emotional withdrawal:
  "He died the moment he was diagnosed...he almost never left the house." (00:22)
  "Your dad retreated and hid like a dog hearing fireworks. He didn't want people to visit. He didn't want to tell anyone." (01:04)

2. The BRCA Mutation, Hope, and Treatment Choices

• Medical Hope and Harsh Realities:
  • Shoshana explains her father's BRCA mutation brought access to targeted therapies, but only after enduring challenging chemo (01:31).
  • Family members struggle to encourage optimism: "If we can cross this bridge, there is something on the other side that's worth going for." (01:49)
  • Despite seeking advice from top cancer specialists, Steven opts for local treatment, showing an ambivalence about fighting the disease (02:23).

3. Mental Health, Depression, and Stigma

• Observing Withdrawal: The family notes increasing withdrawal and lack of engagement, which they come to recognize as depression.
  • "He just went into a cocoon...It was clear he wasn't watching it [TV]." (03:14)
  • Reflecting on the narrative of cancer as a 'fight': "We could actually use a little fight from your dad." (03:41)
• Medical System Shortcomings:
  • Ed expresses frustration at lack of mental health support: "There was just a lot of reluctance to address the challenges that he was going through... something's wrong, and we need to do something about it." (23:52)

4. The Challenges of Decision-Making and Transitioning Goals

• Family's Dilemma: The tension between pushing to continue treatment versus shifting towards acceptance and comfort care is palpable.
  • "Maybe that should have been a clue...make him take a last vacation and then call it a day. I don't know. But we didn't do those things." (04:03)
• Shoshana’s Perspective: Even with resources and knowledge, the journey was still “really, really hard.” (04:57)

5. Discovering Palliative Care—A Turning Point

• Introduction to Palliative Medicine:
  • Shoshana’s early exposure and developing appreciation for palliative care: “It's the practice of medicine for people who are what we call seriously ill and really focuses on improving quality of life for patients and their families.” (07:17)
• Meeting Dr. Mindy Shapiro:
  • Dr. Shapiro’s patient-centered, candid, and compassionate approach stands out:
    "Our procedure is listening, and our skill is in discussing and guiding." (11:30)
    "He was so vibrant, and he so liked living, yet the other half of him knew that his time was limited." (09:43)
• What Makes Palliative Care Unique:
  • “Palliative care is for anybody at any phase in their illness...an extra level of support for them and their families.” (12:20)
  • Team-based and creative solutions, continuity across care settings stressed as crucial (14:49–16:23).

6. The Daily Struggles—Eating, Weight Loss, and Humor

• Physical Symptoms as Emotional Flashpoints:
  • Eating becomes a daily struggle due to pain, loss of appetite, and awkward interventions with cannabis (20:00–21:48).
  • A light-hearted moment: accidentally feeding Steven a dog’s cupcake (20:25) — “How did it taste? Bizarre...Totally bizarre.” (20:33)
• Interventions for Appetite: Attempted cannabis, gummies, tinctures, each with comical but ineffective results (21:30–22:24).

7. Grappling with Depression in Terminal Illness

• Demographics and Resilience:
  • Social worker offers insight: older white men with power sometimes lack resilience due to fewer prior hardships (22:56–23:41).
  • "Facing a terminal illness is huge adversity, and you really need resilience and grit." (23:14)

8. The Limits of Medicine and Importance of Acceptance

• Medicine’s Limits:
  • Dr. Mindy (25:59): "I think that we try very, very hard to find a pill or a treatment...but that’s just not going to cut it."
  • Shoshana: “Treating despair and dread related to a terminal illness is not always as easy as taking a pill.” (25:48)
• The Irony of Expertise:
  • Despite Steven’s career as a sports psychologist teaching optimism and visualization, he struggles to apply it to himself in his illness (26:03–27:56).

9. Transition to Hospice and Final Reflections

• Pivoting Goals:
  • After experimental treatments fail, Steven clearly chooses hospice—“just focus on his comfort.” (30:43)
  • Relief for all: “Eat when you want to eat, drink when you want to drink...play music and the kids would come and play.” (32:22)
  • "Those final days and weeks with my dad were really meaningful. Sometimes they were even funny. Looking back, I'm reminded that even in the hardest times, there can be joy." (32:49)

Notable Quotes & Memorable Moments

• On the Difficulty of Caregiving:
  "Taking care of someone who is seriously ill can be really, really hard." — Dr. Shoshana Ungerleider (00:00)

• Describing Sudden Withdrawal:
  "He died the moment he was diagnosed." — Ed's Daughter (00:22)

• Palliative Care Philosophy:
  "Our procedure is listening, and our skill is in discussing and guiding." — Dr. Mindy Shapiro (11:30)

• On Defining Hospice vs. Palliative Care:
  "Hospice is strictly defined as care for patients who are thought to have a lifespan of six months or less. Palliative care is for anybody at any phase in their illness." — Dr. Mindy Shapiro (12:20)

• On the Challenge of Mental Health in Terminal Illness:
  "We understand that there is anxiety and there's probably depression...And because modern medicine is the way it is—take this and see how you are in two weeks. Well, that's just not going to cut it." — Dr. Mindy Shapiro (24:59)

• Humor Amid Difficulty:
  "We have a family announcement to make. Somebody has played a very mean trick on Pappy." — Child Family Member (20:25)

• Acceptance and Relief:
  "Eat when you want to eat, drink when you want to drink... it wasn’t this battle constantly of trying to get calories in him. And then we just got to play music and the kids would come and play. We would cannonball his swimming pool and just have fun." — Family Member (32:22)

Timestamps for Critical Segments

• Caregiver Honest Reflection: (00:00)
• Father’s Withdrawal after Diagnosis: (00:22–01:04)
• Hope with Targeted Therapy: (01:31)
• Challenges with Treatment & Mental Health: (02:23–04:57)
• Palliative Care Introduction: (06:25–07:43)
• Meeting Dr. Mindy Shapiro: (08:16–15:01)
• Palliative vs. Hospice Explanation: (12:17–12:57)
• Continuity of Care Challenges: (15:01–16:23)
• Mental Health, Depression, and Stigma: (22:24–24:35)
• Expert Insight on Mental Health: (24:46–25:59)
• Applying Sports Psychology to Illness: (26:03–27:56)
• Switch to Targeted Therapy and Rapid Decline: (28:24–31:26)
• Decision for Hospice: (31:26–32:22)
• Finding Joy in Final Days: (32:49–33:14)

Tone & Language

The episode is deeply personal, emotionally raw, yet nuanced with humor and warmth, featuring honest reflections, loving family banter, and expert guidance in straightforward, compassionate language.

Conclusion

This episode offers a powerful, real-life look at the complications, heartbreak, and occasional moments of grace that surround end-of-life care. It highlights the critical roles of palliative care, communication, and confronting the emotional realities—especially mental health—while reminding us of the importance of agency, humor, and connection in our final days. Whether you’re a caregiver, clinician, or someone facing similar circumstances, this episode provides perspective, validation, and hope.