For many, liv­ing with ad­vanced de­men­tia is a fate worse than death

Walker County Messenger - - Front Page - By Kim Callinan

My grand­mother, whom we called “Nana,” al­ways loved chil­dren. Many times, she asked me to give her great­grand­chil­dren.

In 2000, the mo­ment fi­nally ar­rived. But it didn’t seem to mat­ter. Ea­gerly, ten­derly I lay my new­born son in her arms. She sat mo­tion­less, her eyes void. No ex­pres­sion what­so­ever. I searched her face, des­per­ately hop­ing to see some sign of joy, of rec­ol­lec­tion, of un­der­stand­ing. Noth­ing. Her eyes were va­cant. She could not speak. She did not move.

The rea­son? My nana had Alzheimer’s dis­ease. It was dur­ing this visit that I started to con­tem­plate the qual­ity of life and the cer­tainty of death.

Al­most 20 years later, as I lead the largest na­tional or­ga­ni­za­tion ad­vo­cat­ing for pa­tient-driven, end-of-life care, the con­sen­sus among our sup­port­ers is clear: They (and I) see noth­ing com­pas­sion­ate or pa­tient-driven about how peo­ple with de­men­tia die.

The cul­tural “norm” in the United States is that life -- re­gard­less of the qual­ity of that life -is bet­ter than death. Tra­di­tion­ally, love means keep­ing some­one alive, not help­ing him or her die peace­fully. We are so afraid of death that we don’t ask our loved ones what they want. This par­a­lyz­ing fear of life’s fi­nal chap­ter leaves us guess­ing, guilt-rid­den and trapped in the de­fault mode of our med­i­cal sys­tem -- life­ex­tend­ing tests and treat­ments -- even for a loved one hol­lowed by de­men­tia.

We spoon feed and hy­drate peo­ple with ad­vanced de­men­tia, even though los­ing the de­sire to eat and drink is a nat­u­ral part of the dy­ing process. We pre­scribe med­i­cal treat­ments -such as kid­ney dial­y­sis -- even if the per­son de­clined this pref­er­ence in writ­ing when they were ca­pa­ble of mak­ing an in­formed health­care de­ci­sion. We mar­shal ev­ery re­source to ex­tend life and sub­ject nine out of 10 de­men­tia pa­tients to at least one in­va­sive med­i­cal pro­ce­dure in their last week of life. We don’t merely refuse to let peo­ple with de­men­tia die; we do every­thing pos­si­ble to keep them alive.

This de­fault mode of our med­i­cal sys­tem con­tra­dicts what most peo­ple want. Ac­cord­ing to a study pub­lished by the Jour­nal of the Amer­i­can Med­i­cal As­so­ci­a­tion (JAMA), many peo­ple re­gard be­ing con­fused all the time (45 per­cent) as a fate worse than death. We are us­ing medicine and hu­man in­ter­ven­tion to keep peo­ple alive for years -- long past when they would nat­u­rally die. Peo­ple should be able to doc­u­ment their de­sires be­fore they have lost their men­tal ca­pac­ity to make in­formed health­care de­ci­sions and re­al­ize a death, if that is their pref­er­ence.

This is dif­fer­ent from -- and should not be con­fused with -- ex­tend­ing med­i­cal aid-in-dy­ing laws in Cal­i­for­nia, Colorado, Ore­gon, Ver­mont, Wash­ing­ton and Wash­ing­ton, D.C. to peo­ple with de­men­tia. Con­flat­ing ad­vance di­rec­tives in­struct­ing care providers not to ar­ti­fi­cially pro­long the per­son’s dy­ing process and ask­ing for a pre­scrip­tion for med­i­cal aid in dy­ing, as op­po­nents of both op­tions have been do­ing, is ir­re­spon­si­ble and mis­lead­ing.

Six mil­lion peo­ple have de­men­tia right now. Ac­cord­ing to a newly re­leased study that num­ber will grow to 15 mil­lion by 2060. Ab­sent a mir­a­cle cure for de­men­tia, mil­lions more Amer­i­cans will suf­fer from this dev­as­tat­ing dis­ease in the decades to come. It’s time we es­tab­lish a new cul­tural norm about death: one that re­spects the in­di­vid­ual per­son’s au­ton­omy to de­cide their fate.

Kim Callinan is the chief ex­ec­u­tive of­fi­cer for the Port­land-based Com­pas­sion & Choices, the largest na­tional or­ga­ni­za­tion de­voted ex­clu­sively to pa­tient-driven, end-of-life care. She has a Mas­ter’s de­gree in pub­lic pol­icy from Ge­orge­town Univer­sity.

Kim Callinan

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