My travels usually take me to far-flung places, but today is different. I\u27m on a train to New York City, shuttling back and forth from Washington, DC. My father is 101 years old, and just one year ago he gave a 30-minute speech without notes at his centenary birthday celebration. He ended his speech saying, “I\u27m often asked how I lived so long. The answer is I just lived.” An uncomplicated man who lived a long and complicated life, staying mindfully in the present. Here is his story about a 101-year-old, decorated World War II Veteran, who our country and health system cannot seem to offer care and dignity at life’s end

Gostin, Lawrence O.

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The “Great” Generation and a Not-So-Great Health System

LAWRENCE O. GOSTIN

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Georgetown University Law Center Scholarship @ GEORGETOWN LAW 2017 The “Great” Generation and a Not-So-Great Health System Lawrence O. Gostin Georgetown University, gostin@law.georgetown.edu   This paper can be downloaded free of charge from: https://scholarship.law.georgetown.edu/facpub/2017 https://ssrn.com/abstract=3091174  95 Milbank Q. 698-701 This open-access article is brought to you by the Georgetown Law Library. Posted with permission of the author. Follow this and additional works at: https://scholarship.law.georgetown.edu/facpub Op-EdThe “Great” Generation and a Not-So-GreatHealth SystemLAWRENCE O. GOSTINM y travels usually take me to far-flung places, buttoday is different. I’m on a train to New York City, shuttlingback and forth fromWashington, DC. My father is 101 yearsold, and just one year ago he gave a 30-minute speechwithout notes at hiscentenary birthday celebration. He ended his speech saying, “I’m oftenasked how I lived so long. The answer is I just lived.” An uncomplicatedman who lived a long and complicated life, staying mindfully in thepresent.But he also said something that lingers in my memory about aging:“At a certain point I could no longer play handball, no longer swim,and no longer bike—but that was all right. I will remain happy as longas I can walk.” Only 4 weeks ago, he would take a daily mile-longstroll through Kissena Park in Queens, the lake flanked by weepingwillows and shady trees—pausing to sit on a bench to read theNew YorkTimes, watching the swans. Now he is bedridden, felled by a massive leginfection that he never realized was sapping him of life. The journey is aprofound one for me too. My mother died young so I never experiencedthe weight of managing care at life’s end. Here is my deeply personalstory about my father.Allowme to first introduce you to this 101-year-oldman,who actuallymet Civil War veterans, whose sister was killed by a horse and carriage,whose only true president was FDR (and who in a century never sawanything like our current president), and who fought for workers’ rightsas a shop steward on the factory floor. Latvian by descent, he met mymother, who had fled the Holocaust from Warsaw.In 1955, he took out a second mortgage on his house to pay foran operation on my mother’s “inoperable” pituitary tumor. When thesurgeon botched the operation, my father took out a third mortgage topay for still another costly operation. After years of slow deteriorationlater, my mother died languishing in a Veterans Administration (VA)The Milbank Quarterly, Vol. 95, No. 4, 2017 (pp. 698-701)c© 2017 Milbank Memorial Fund. Published by Wiley Periodicals Inc.698The “Great” Generation and a Not-So-Great Health System 699hospital. Nowmy father wants to go to a VA hospital to avoid “spendingdown” his remaining assets to qualify for Medicaid. The most importantthing for him is the financial security of the lovely wife he marriedafter my mother’s death, a spry “young” 89-year-old treasure. They holdhands for hours, as she rests gently on his hospital bed.I discovered to my surprise that World War II veterans withoutservice-related injuries score rock bottom on the VA’s priority list. Thinkwhat that says about America, failing to care for a veteran who foughtthe Nazis in the Pacific.As my father lived in a poor neighborhood, the ambulance took himto the local city hospital. For over a week, no doctor would talk withme or return my calls. The caseworker (social worker) just handed me apiece of paper listing rehabilitation clinics. The hospital never asked myfather what he wanted, although he was entirely lucid. (Nor did they askme, his medical proxy.) What he wanted was a dignified, humane dyingprocess. He told me he had lived the richest life imaginable, filled withthe love of children, grandchildren, and great-grandchildren. I struggledhard to make sure the medical charts registered my father’s wish for ado-not-resuscitate order, but it never seemed to make it into his records.The hospital offered no help on how to choose an appropriate set-ting, or how to pay for his care. The doctors and social workers didn’teven seem to care what the family wanted or whether we could affordnursing care. It was only when the hospital was trying to push himout the door that his physician and social worker called me—and ha-rassed me—threatening to discharge him. I insisted he was not ready.He was bedridden, refusing food, with a raging infection, severe hy-pothyroidism, stage-3 kidney disease, and oozing liquid coming out ofevery extremity. And he had nowhere to go. Despite my strong wishes,the hospital caseworker went directly to my 89-year-old stepmother,insisting he must leave the following day, bringing her to tears.No one ever treated me as a son losing a father, or my stepmotheras a wife losing a husband. If the hospital staff could bring me totears, how would such cold treatment affect a poor family withoutknowledge of the health system? I wrote a multipage letter to thehospital president, shamefully underscoring my life’s work in health.And suddenly the hospital showered the family with attention. Finally,the hospital agreed to geriatric and palliative care consultations. Whatmust this awful process be like for families that are unable to assert theirrights?700 L.O. GostinMy father’s life before entering the hospital was filled with joy. A fewyears ago he traveled to Chicago and to England for my sons’ weddings.Last October, he was the first to arrive at the birth of my granddaughterAviva. (He took three buses from Queens to Manhattan, two hourseach way. His motto: “The car is the enemy.”). Aviva was born onmy birthday and her middle name is Sylvia—my mother’s name. Ihave a remarkable photo of 4 generations: my century-old father, myson, my father’s just-born great-granddaughter, and me—from 0 to100 years! Just months later, he found himself wishing for a peacefuldeath.4 generations: From 0 to 100Gratefully, my father’s story ends well. My New York colleaguesintroduced me to the medical director of a unique specialty hospitalthat provides palliative care for adult patients with complex needs.Although the Queens hospital would not certify my father’s eligibilityfor the Medicare Hospice Benefit (he didn’t have a terminal disease!), thespecialty hospital medical director successfully made the case that myfather met the criteria for care at the facility. Within hours, he arrangedfor my father’s transportation, first ensuring that applicable Medicareprogram benefits would cover the full cost.The “Great” Generation and a Not-So-Great Health System 701What a difference an institution makes, as his doctors, nurses, andsocial workers lovingly explained his care plan. In the ensuing days, heattended a live concert, sat outdoors in the gardens, and read the NewYork Times. His loving wife slept overnight by his side, and the hospitalprovided her with grief counseling and social support. His appetite hasreturned and he has a fresh interest in life’s joys. Of course I know he islikely to die within months. But he will die peacefully, content in theknowledge that his children, grandchildren, and great-grandchildrenare his legacy. His wish to my son today was to be with his beautifulwife and daughter. That is the “Great” generation.Wouldn’t it be fitting if America had a truly great health system, withhumane care throughout the life span? In the world’s richest country, isit too much to ask that we treat everyone when they are sick, care forthem when they are suffering, and allow them to die humanely and withdignity when the journey is over?Address correspondence to: Lawrence O. Gostin, Georgetown Law, 600 NewJersey Ave NW,McDonough 574,Washington, DC 20001 (email: gostin@law.georgetown.edu).

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