Tino (TD): You’re listening to Firsts, a podcast about first-time medical experiences. My name is Tino Delamerced, and I am a medical student.
(sound of waves)
TD: On June 7, as I was finishing this episode, my mom’s dad Victorino Cusi passed away. He was 95. My family lives oceans away from where he lived in the Philippines. Growing up, we’d visit him and extended family once a year in the summer. At the end of one of our trips to the Philippines, I remember my mom was saying goodbye to my grandpa, hugging him, and crying. As a kid, I couldn’t fully grasp why she was tearful. But as I’ve grown older, I’ve started to realize that it was the feeling of saying goodbye to home. Of being 24 hours away by flight and in time zones 12 hours apart. Of not knowing when the next time would be when we’d see some of the people we loved the most.
Because of the pandemic and the unexpected timing of his death, my mom, her siblings, and most my family weren’t physically there when my grandfather passed. With that come emotions of deep sadness and guilt and a lot more that I can’t even begin to comprehend. This whole experience has made me think how loss might have been for a lot of people during the pandemic. With little opportunity to visit loved ones in hospitals and nursing homes because of COVID, too many of us have missed out on the final moments of loved ones this year.
My grandfather was a community builder, land developer, businessman, philanthropist, and beloved father, grandfather, and great-grandfather. I will introduce this episode in a second, but for now, please join me in a moment of silence for my grandfather and all the lives that have been lost this year.
(silence)
So, back to this episode: it’s the second of a 2-part series called “First and Last.” If you haven’t already, check out part 1, which talks about delivering babies, miscarriage, and a miraculous birth. You’re listening to Part 2, which is about death, dying, and loss.
We can’t avoid sadness when we speak about loss. But losing a loved one can also be a time of peace, a time to share stories and joyful memories, and a time to bring family, friends, and community together. In this episode, we join one med student on her experience with loss during med school. She was learning to take care of kids with cancer when she learned that her own grandmother’s health was declining. Lindsey Pileika, a fourth-year medical student, has this story.
(music)
Lindsey Pileika (LP):
The Gift, by Mary Oliver
“Be still, my soul, and steadfast.
Earth and heaven both are still watching
though time is draining from the clock
and your walk, that was confident and quick, has become slow.
So, be slow if you must, but let
the heart still play its true part...
Let God and the world know you are grateful.
That the gift has been given.”
On my first day working with kids living with cancer, I was told not to wake patients up. I visited patients’ rooms as a guest, carefully with the lights off. Some kids would be asleep on their parents’ chests, and I would slide my stethoscope quietly onto their backs. Other kids rested alone, worn out by both the treatment and disease.
Dr. Angela Anderson, a pediatrician who works in palliative care, taught me how to be there for kids, and their families, when they were dying.
Dr. Angela Anderson: You’re meeting people frequently at maybe the worst time of their life or the most scary time of their life or the most emotional time of their lives, and all you’re trying to do is really walk that road with them so that they don’t feel so alone or so scared. There can be, I hope, – I don’t know whether to use the word ‘should’ – but the hope is that it’s peaceful, that it’s loving, that it’s a time to share and remember. It’s a time to be grateful. And I kind of like to bring those things up. I do pediatrics, so what did your little guy, your little son, or your little daughter – what did they teach you? How have they changed your life? It’s an opportunity to really honor them and thank them.
Sometimes, when we needed to plan next steps for treatment, we had really difficult conversations with patients and their families. Some patients had diseases that didn’t have a cure, while others faced possible treatments that were costly or even risky.
Our approach to those meetings was to ask families and patients how they understood what was going on. Then, we’d make sure to know what goals they had, and what was important to them. We’d let them know how a disease might play out, and we’d tell them what treatments were out there. We wanted them to know that we were on their side, and that we’d form a plan in line with their wishes.
(music)
Meanwhile, I was having similar, but equally difficult conversations with my family.
Interjecting background voice: “This is a 90-year-old female with major neurocognitive disorder…”
In the hospital, I often feel like I’m taught to use the “objective” muscles of my brain on a day-to-day basis. We often discuss people in the context of their medical problems, focusing on what lab values might be out of the ordinary or which diseases may be at play. But often, it can be difficult to exercise the “humanizing” muscles of my brain, like the ones that let me connect with patients at the bedside, or even process the stories patients share.
I didn’t realize that this tendency to view patients through their data points of disease would be something I would cling onto even at a time when someone in my own family was dying.
(music ends)
LP: At the start of this year, my mom was in her eighteenth month as a full-time caregiver for my grandma Betty. She had advanced dementia, an illness that affects memory and thinking. Because of her dementia, she had trouble with everyday tasks, like cooking, cleaning, or driving. So for the past couple of years, my mom helped my grandma with almost every part of her life.
(sounds of a marker on a whiteboard, food chopped up, a rustling newspaper, and car keys in the ignition)
LP: Each morning, my mom would wake up and greet my grandma with a message on a whiteboard. She would write a note about the weather, date, and activities for the day. She would prepare her favorite breakfast foods and have the Cape Cod Times waiting for her at the kitchen table. Then, she’d often drive her to check out a book at the library or to visit a friend.
But one day, at the beginning of the year, my grandmother stopped reading my mom’s morning messages and the daily paper and the library books. (tense music) She started looking around the house for things that weren’t there, like jewelry or purses. She became fascinated by the scenery outside her window, (wind chimes) like the trees dancing in the wind or the birds coming to the feeder (bird sounds). In the middle of the night, she’d often wake up and get dressed for the next day when she had only slept for 30 minutes. As my mom said, it was as if “her brain was on fire.”
(piano music)
LP: One afternoon, in the hospital, I noticed I had 5 missed calls and 2 texts from my sister. I called her back, and she told me that an ambulance was taking our grandma to the emergency room. She said our grandma’s thinking had been worse than usual, and she had barely been getting any sleep. When I finished work that Friday, I drove home to Cape Cod in Massachusetts, hoping my family and I would learn what was going on.
For a few days, we waited to hear if my grandmother had any new diagnosis. We knew that she was confused and restless, and she didn’t know where she was. But by her fourth hospital day, we found that all her tests were normal.
Through this all, because of COVID, we were only allowed to talk to my grandmother over the phone.
Barbara Brosman (BB): So I felt very frustrated and didn’t know what to do, and I could hear in my mother’s voice she was very upset, confused, and I wasn’t there to advocate for her at all, other than a phone call...
LP: My mom called the hospital everyday my grandmother was there, asking if we could visit. On the fourth day, we received a call from a nurse.
BB: And she said, “I’m gonna stretch the rules.” She said, “I couldn’t live with myself if I didn’t let you in. Like, I wouldn’t be able to sleep tonight if I didn’t let you come.”
LP: So my mom got things ready and left for the hospital.
(music, and sounds of packing)
(sound of a blender)
BB: They said she wasn’t eating. She loves ice cream – that was her favorite thing. So I made a little milkshake for her, and I got that all together, and I think I brought some lip gloss – I think I brought her a pair of pajamas.
LP: When my mom arrived at the emergency room, she didn’t know what to expect. But when she finally pulled back the curtain to my grandma’s room, she knew something was very wrong.
BB: I open up the curtain, and I didn’t even recognize my mother. You know, I put the straw up against her mouth and said, “Look, mom, it’s Four Seas – it’s your favorite.” And she spit it out. She wouldn’t even take the ice cream. And – the feeling – I can’t even describe the feeling, but I knew she was – this was it. She just looked so uncomfortable and so outside of who she was. She wasn’t my mom anymore.
LP: My grandma hadn’t been eating since two days before. She spit out any medication given to her. And when my mom tried feeding her her favorite milkshake, she didn’t open her mouth.
(music)
LP: My mom and one of her sisters agreed that they should speak with a hospice nurse about my grandma. For those who don’t know, hospice care makes comfort and quality of life a priority for folks at the end of life. It’s a type of healthcare that can often meet their emotional and spiritual needs too. A hospice nurse stopped by, ...
BB: ...and he came into the room, and he opened up the curtain, – I saw him – and he immediately said, “Oh, my God. We have to get her out of here.”
(music)
LP: One thing my mom knew for certain was that my grandma needed to be in a place more comforting than the emergency room, especially if she was dying.
(music fades)
(people talking)
BB: So the description of the emergency room – first of all, you know, there’s tons of medical staff standing around. There’s my mom in this hospital bed. Bright, bright lights. Several machinery around her. Very sterile-looking. No windows.
(heart monitor fades in and out)
LP: According to a study published in the New England Journal of Medicine, the hospital was the most common place of death in 2003. (music) Over the past couple of decades, there’s been a movement to talk with patients sooner about death to figure out what’s most important to them at the end of life. Now, there are more facilities that offer comfort care for dying patients, and there’s been a growing awareness and concern about quality of life in the final days to years. In 2015, 1.4 million Americans received hospice services at home or in a hospice center. And, by 2017, more patients were dying at home than in the hospital. And places with end-of-life care, like hospice facilities, also became a common place where people passed away.
On the fourth day of my grandmother’s hospital stay, a hospice nurse recognized almost immediately that she was dying. He spoke with the rest of the medical team and advocated to transfer my grandma to a hospice facility, a comforting space that would care for her as she was dying.
BB: That was the best place she could be. I’m so blessed and thankful for him to have been there and to see her in that state. He was, I feel, our guardian angel that came in at the right time and got us to where she was supposed to be.
(music fades)
LP: From the moment that she walked in, my mom could tell that the hospice center was a lot different from the emergency room.
BB: Even walking into the lobby area, it was just a beautiful, open, inviting room with a grand piano and a fireplace and comfy chairs, and it was like being in like really in somebody’s home almost.
LP: The walls were made of natural wood, and each room had glass windows that spanned the length of the wall. A small window in the tall, cathedral ceilings let in natural light when mornings came. Gone were the tubes and alarms and beepings and bright lights. Outside, a porch that connected to her room overlooked a gazebo and the woods beyond, which were covered in a blanket of snow.
(guitar music)
LP: The size of my grandmother’s room was inviting for family members to sit around her. Unlike the hospital, we were all allowed to visit my grandma.
BB: Everyone – they were allowed 2 people per time in there, and you could stay as long as you wanted 24 hours. You could have even slept on the couch if you wanted.
LP: During our visits, we told stories about my grandma, held her hand, and began to grieve. We brought in food, pictures, and music. We made the space our own. It was much more than just a patient’s room. I felt safe crying there. While we visited, a guitarist came periodically and took song requests. My grandmother’s minister came to offer prayers and counseling. And Ellen, a nurse practitioner, answered questions we had. For example, we asked if my grandma could hear us when we talked to her.
Ellen McCabe (EM): I sometimes explain to families – I say, have you ever fallen asleep in the car, and yet, everybody around you thinks you’re sound asleep, but you might hear what’s on the radio? You might feel the sun coming in the window of the car. You might actually hear conversation and be able to repeat it later. So everyone thinks you might be asleep, but you’re not quite asleep. You’re just in a sleep-like state, and I think that person at the end of life is very much like that…
LP: She also explained what hospice was to family members who didn’t know as much about it.
EM: We view our patients as living, not dying, so they’re living until they’re not, so we’re trying to meet their goals and their hopes and their desires and their dreams – whatever they may be. And we try to be creative and open, that we use not just medicine but other measures to try to achieve that. We’re creative. We let pets in. We had a patient who passed, and his son was concerned that his dog might not know that he had died, so they asked postmortem for the dog to visit. Not everybody needs that, but they needed that. I think that we’re trying to shift the traditional focus. That if you didn’t have to be stuck for labs, if you didn’t have to be rolled over to have X-ray films slid underneath you, what more could you do to provide for that person’s comfort? And I think that’s where we focus on.
LP: My grandmother wasn’t speaking, so we asked Ellen how to know if my grandma was comfortable, or if she needed medication for pain. She told us to look at the face of my grandma for clues: if she looked relaxed, that was a good sign, but a furrowed brow or a tense, worried look might mean she’s in pain.
EM: We usually would err on the side of comfort vs. assuming that somebody suddenly didn’t have pain when they did have pain before. So we could continue to medicate at the rate we were medicating when they could tell us. And I don’t think that in medicine or nursing, that we fully have appreciated how helpful it is to have loved ones at the bedside who say, “I think my mom’s uncomfortable. I think she’s hungry. I think my dad – he’s not right. There’s something going on with him.”
BB: The nurse practitioner there, who – I can’t even begin to tell you how wonderful she was to help us with all the questions we had and concerns, and all the staff was just so, so easy to talk to, and you didn’t feel uncomfortable about asking a question...
EM: It’s just a wonderful thing to bring some solace and comfort to people at a really challenging time. (music starts) And when you spoke about doing a segment on birth, a lot of the same anxieties and fears and worry and discomfort that are present when people breathe life into this world for the first time are very similar to those same fears and anxieties about what’s gonna happen, and how is it going to go, and will I be uncomfortable, and will my family be okay? Those same sort of things are going on in our realm. I think there’s more commonalities than there are differences, to be honest.
LP: My grandma, Elizabeth Brosman, was born on January 27th, 1931 in Detroit, Michigan. She was a mother to 4 daughters, grandma to 8 grandchildren, and great-grandma to 14. She attended Northeastern University and Leslie University, gaining the tools and education to become the blood bank supervisor at the New England Deaconness Hospital.
She was always present for major life events, from the first day of kindergarten to my white coat ceremony, where she was eager to see the anatomy lab after a lifetime working in science and hematology. My most salient memories of her are from Saturday afternoons when she would be lost in her garden. From green beans to bushes of hydrangeas or even sunflowers, she could nurture anything to life. During her final days, we would often sit together listening to books on tape, painting the trees and landscape that surrounded her home, and – her favorite – sketching the birds that came to visit.
Each day with my grandmother was a gift. She stayed for 6 days in the McCarthy Hospice Center in Cape Cod, Massachusetts. And on February 12th, 2 weeks after celebrating her 90th birthday, she passed away.
BB: The amount of time that we had – I mean, I think everyday that we had, we thought this was the day. And it was when she was by herself, they said she passed peacefully.
(beat)
LP: The hospice center gave my grandmother a place where she could pass with dignity. It gave me a place to feel my grief. And it brought my family together in a space where we could reconnect, reminisce, and begin to find peace.
(silence)
TD: Many hospice facilities in the United States bring people together for the final moments of their loved ones. But a sadder reality exists for many families. Because of COVID, it is and was impossible for many people to be with their loved ones when they were dying. This is something that my family is feeling now, esp. as many of us are scattered all over the world and are mourning my grandfather’s loss. I hope for a future where families like my own can gather again - to rejoice, mourn, and honor those we’ve lost, together.
(acoustic guitar music)
TD: That was First and Last, part 2. This episode was hosted and written by me and Lindsey Pileika. It was produced and edited by me. A huge thank you to Lindsey for all her help with this episode. And we are very grateful to Dr. Angie Anderson, Barbara Brosman, and Ellen McCabe for their interviews. Music is from Blue Dot Sessions.
What are your thoughts on hospice? Follow @FirstsPod on Facebook, Instagram, and Twitter, and let us know what you think. And for more information about hospice, check out firsts.site for a list of resources that helped us make this episode.
My name is Tino Delamerced. You’ve been listening to Firsts.