Recipe For Disaster

My sister was born with heart disease. When 6-year-old Jean died, I was almost 5 years old.

Being thin helped keep her alive. The less she weighed the less work her heart had to do.

In my long career as a social worker, I have found myself in demanding settings. For the past 5 years I have worked with patients with lung cancer. Often my patients required needs such as home hydration, oxygen, and hospice–all of which required an immediate response. Usually, I scarfed down pizza, chips, or whatever was at hand. Working from home during the COVID-19 pandemic allowed me to take the time to cook and eat well – which is important for people with lung cancer. It also reminded me of Jean, and how her illness and death influenced my decision to pursue social work as a career and my love of cooking as a hobby. Every working hour challenges me to find supportive solutions for clients. Here is a glimpse into the life.

Thursday May 6, 2021

5:00 am My husband, Agustin, brings me coffee in bed and a second cup to assure I get up. He likes to talk and tells me about his day as he cleans the kitchen, sweeps all the floors, cleans the litter, feeds our cat, takes out the garbage, pays the bills. He likes to laugh and is opinionated. If I tell him I disagree with him he replies with, “Well I agree with me!” He doses out laughter and leaves to work at 5:00 am while I head to the kitchen to bake a crusty no-knead bread found on the package of King Arthur’s unbleached flour.

9:00 am I call Cindy, a 68-year-old lawyer and single mother of her 32-year-old son, to discuss end-of-life choices. Cindy had worked in the NYC courts near Ground Zero, and I am guiding her son as he files a claim with the 9/11 fund. Cindy’s biggest regret in dying is not being present to see her son’s life unfold, but rather than dwell in lament, she chooses to meticulously prepare. She has found an apartment for him in her building so he will be nearby and safe. She has finalized her will, documents, instructions, and passwords. She tells me how facing her own death brings up memories of her teenage friend who was 1 of the 4 students who was fatally shot at Kent State.

I wonder if this experience influenced her choice to become a lawyer the way my sister’s death influenced me.

10:00 am I call Marie, a 46-year-old, recently diagnosed, mother of 2. Her oncologist thinks she needs a psychiatrist and anti-anxiety medications. I have never met Marie, but I know she is an NYU oncology nurse, a colleague, and a patient. Her diagnosis reminds me that anything can happen to anyone. I ask her about her sleeplessness, panic attacks, past psychiatric history, and if she is suicidal. Marie explains that she had a few bad days but has bounced back. She feels no need for psychiatry or medications though she might consider psychotherapy in the future. She credits her oncologist and her family for bolstering her resilience; both her mother and aunt are nurses. I explain that her resilience is an inner resource, sometimes referred to as a “muscle” that can be strengthened with use.

I ask how she is managing financially and at work. She is on disability but hopes to return to nursing. “I can review charts,” she muses, “but I am best hands-on. Maybe I can help by telephone. After all I have the perspective of an oncology patient and nurse.” I am glad that Marie said “patient” before “nurse,” as her job now is to be a patient. Careful not to treat her differently than other patients, I let her know that support groups, and massage and acupuncture services are available, and I give her my contacts.

11:00 am I set up a virtual meeting to speak with the social work intern slated to start field placement in the fall. Interns do important work. For 3 years I focused my interns on building a support network for caregivers—now a vibrant and valued support group facilitated by a colleague. With lunch on my mind, I dump split green peas in a pot with water, boil them for 2 minutes, and set aside.

Back at my desk with headphones on, I welcome the intern as she appears on the screen. I describe 2 programs to be developed. First, a virtual memorial for families to honor their loved ones, our patients, who died. Prior to the pandemic, the program was live and included a harpist. The plan is to rework this tribute into a Zoom format. The second program is aimed at identifying and distilling the needs of younger people, often women, with lung cancer, a growing demographic.

I don’t want the student to think lung cancer has only dire outcomes. I explain that though death often occurs, immune and targeted therapy have yielded gains in longevity and hope abounds. The lung cancer support group she will facilitate includes a college professor, an artist, and a dancer—9, 10 and 11 years after a stage IV diagnosis.

12:00 pm Edna, a 43-year-old, Orthodox Jewish, mother of 7, arrives at the clinic by ambulance. She refuses hospice; her husband explains that everyone they knew who had hospice had a dire outcome and that there aren’t any good hospices in their New Jersey township. I explain that hospice does not hasten death but helps an individual live as long as they can as well as they can. Studies show that patients with lung cancer on hospice may have 4 months added to their lives. I call local hospices to assess their potential, but since she prefers not to enroll, I begin the herculean task of arranging end-of-life care in her home with her doctor: home IV fluids, a visiting nurse, caregivers, Foley catheter, a hospital bed, morphine, and oxygen. Hospice would have been the easy way, but this is not about the easy way, it is about the patient’s way.

Her oncologist, Dr. Chachoua, like a conductor, orchestrates the timing of multiple home treatments while nurses, respiratory therapists, pharmacists, and home care workers text and call him night and day. Family have been unable to visit their loved ones in the hospital due to COVID-19 restrictions making her care at home a treasure.

The oncologists’ hard work allows many patients to live and prosper. But, despite their best efforts, sometimes patients fall like combat soldiers, one after another. We turn to each other for help coping with what at times feels like insurmountable loss. Prior to the pandemic, Dr. Rosenthal, the chief psychiatrist, and I co-facilitated support groups for the oncologists, nurse practitioners and infusion nurses to help process the many deaths and difficulties they face. We could not keep it up during COVID, when it was needed most.

During the Lung Cancer Research Foundation’s awareness walk, staff, patients, caregivers and families of deceased patients mingled as we walked over the Brooklyn Bridge and back. As health care professionals, we develop close bonds not just with those undergoing treatment but with the caregivers. We have a common mission: to keep the patient well. When a patient dies, not only is the patient gone but the caregiver is gone, too. An awareness walk for lung cancer research is an opportunity to keep in touch with families who remain important to us.

1:00 pm I keep thinking about how to help Jenny, a lonely octogenarian and retired professor, who suffers with progressive disease and cognitive decline. After her doctor recommended hospice, we talked about her life, death, fears, and regrets. She acknowledged that she suffers from paranoia and hoarding, behaviors that have distanced her friends, family and loved ones. Early in the pandemic, I presented a workshop about coping with loneliness as part of the hospital’s Community Outreach program. The depth of damage loneliness can do to a person’s physical and emotional health is enormous. COVID-19 and cancer both increase a person’s risk of becoming lonely—as does hoarding.

Jenny was such a fashionable dresser and so intelligent and so kind that I never suspected hoarding behavior. Her cognitive decline is difficult to detect in conversation but noticeable in her procrastination. She has money to hire help and the contacts of vendors to repair, clean, and organize her home, and her landlord is eager to help, yet she can’t act. I mull over making an Adult Protective Services (APS) referral. APS is a government program designed to protect the elderly from abusers as well as from themselves if they are putting themselves at risk. Hoarding and being unable to fix her apartment and accept hospice all put her health and life at risk. Plus, she could use help managing her money.

I try to determine if involving APS is the best move. Though APS can be called without a client’s permission, given Jenny’s paranoia, I want her to agree. Jenny has always put me first when we speak, asking how I feel and thanking me for helping her. I have never been able to implement anything to help her. I listen and offer encouragement, but I do not feel we are gaining on the goal to arrange for a hospice referral.

I feel a sense of urgency. I don’t want her to be alone without help or die without pain control.

1:30 pm It is important to include nature and the outdoors into my day for physical and mental health. I know this because a few years ago I had a heart attack.

Overwork, eating poorly, and lack of exercise is a risk of this work and I worry about my colleagues who don’t put themselves first. I have a psychologist who specializes in physician burnout on speed-dial. For lunch I pack a sandwich and head to Central Park. I watch roller skaters dance to house music. Salsa dancing is in full swing at the Bethesda fountain. I come to a bench with a former support group member’s name etched on it. A musician once shared with the support group the importance of drumming—how the tap-tap tapping was much like listening to a heartbeat.

I sit and remember Sigbritt, an octogenarian Swedish immigrant who spoke 6 languages and had raised a family. She had lived well for almost 10 years with a diagnosis of stage IV lung cancer. Sigbritt was blind and used a cane. Neil, a younger support group member, would jump up to help her when she entered the room. I told him privately, “Thank you Neil, for helping Sigbritt with her blindness.” Neil incredulously responded, “She’s blind?” He was just being gentlemanly.

I consider my career choice and what it has meant. The goal has been to make people’s experience with cancer as good as can be. A patient’s wife wept as she told me how his oncologist, Dr. Sabari, fixed her husband’s hair, sat beside him and whispered, “You are a good man. Your life was important.” Dr. Sabari’s expert medical care wrapped in compassion gave this family solace and courage. When my own life is ending, I will draw upon the strength, humility and resourcefulness I have witnessed in colleagues, patients and families to guide me. Yet, if it weren’t for the early loss of my sister, I might have never been motivated to be there for others at the end of their lives.