by Catherine Paykin, LCSW-R
 
My sister was born with heart disease. I was five when six-year-old Jean died. Her illness and death influenced my choosing social work as a career.
 
For the past five years I have been working with lung cancer patients. Meeting needs such as home hydration, oxygen and hospice requires an immediate response. Every working hour has challenged me to find practical and supportive solutions for clients and their families. Here is a glimpse into a typical day.

Edna, a 43-year-old Orthodox Jewish mother, arrives at the clinic by ambulance. She refused hospice; her husband explained 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 lung cancer patients on hospice may have four 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, 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, orchestrates like a conductor the timing of multiple home treatments with nurses, respiratory therapists, pharmacists and home care workers who will text and call him night and day.

I have been thinking about how to help Jenny, an octogenarian and retired college 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 loved ones. Jenny was such a fashionable dresser and so intelligent that I never suspected the apartment’s ruin. She has money to hire help and access to repairmen and cleaners. Her landlord is eager to help. Yet, she can’t trust them or take action. 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. Being unable to fix her apartment and accept hospice is a risk. Plus, she could use help managing her money. 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. However, I have never been able to implement anything to help her. I feel a sense of urgency. I don’t want her to be alone without help or die without pain control.

Terrance, a single, 72-year-old man with lung cancer, is often asked if he smoked. This question leaves him feeling ashamed. He smoked most of his life and still occasionally puffs. “If you had a life like mine you would smoke too,” he explains. He worked nights at a city drug treatment center. We bond speaking about his social-work-type job that was the focal point of much of his life. Now estranged from his sister and nieces, he blames his habit of putting work before family, conveniently ignoring his own struggle with addictions. Sometimes climbing the five flights to his apartment is too much for him and he will ask me to arrange meal deliveries. Then he cancels. It is not unusual when people are feeling better to think they must have imagined feeling so poorly. Before he was forced to retire due to lung cancer, Terrance went the extra mile to help people seeking alcohol and drug treatment. I encourage him to grant himself that same compassion. I remind him how much he cut down his smoking and to be proud of that.

I straggle between protecting patient choice while advocating for safety and stretch resources to provide patient-centered care. The challenge is to help people live and die as well as they can. If it wasn’t for my sister, I might have never been motivated to be there for others at the end of their lives.