Sup­port­ing pal­lia­tive care bill now could help your fam­ily later

Baltimore Sun - - COMMENTARY - By Kris­tine Har­ring­ton Kris­tine Har­ring­ton is a pal­lia­tive care nurse prac­ti­tioner; her email is kristinejo.har­ring­ton@gmail.com.

Imag­ine you’ve been told you have a se­ri­ous ill­ness. Per­haps it is can­cer. Or heart fail­ure. Or ad­vanced lung dis­ease. Or de­men­tia.

Chances are, you know and love some­one (or you are some­one) fac­ing a di­ag­no­sis like this. Two-thirds of Amer­i­cans over the age of 65 are liv­ing with mul­ti­ple chronic con­di­tions. The num­ber of new cases of can­cer is ex­pected to in­crease by 45 per­cent be­tween the years 2010 and 2030. The num­ber of Amer­i­cans liv­ing with de­men­tia and Parkinson’s dis­ease will also grow ex­po­nen­tially.

Imag­ine you are fac­ing some dif­fi­cult changes. Per­haps you have pain. Per­haps you can’t walk with­out run­ning out of breath. Per­haps your treat­ment is mak­ing you so nau­se­ated that you don’t want to move. Per­haps you don’t want to leave the house be­cause you are wor­ried you can’t find your way back.

Chances are, the spe­cial­ist who just de­liv­ered this news is an ex­pert at treat­ing ill­ness. Chances are, she or he has re­ceived years of ed­u­ca­tion and train­ing but still may not be an ex­pert at treat­ing you.

Now imag­ine that there are health care pro­fes­sion­als whose job is to ask the ques­tion: “How do you want to live?” Imag­ine th­ese pro­fes­sion­als know how to treat your symp­toms, are com­fort­able with ask­ing you your wishes and are ex­perts at help­ing you de­fine your qual­ity of life. Imag­ine that they can help you de­cide what you want to hap­pen if you are one day no longer able to de­cide for your­self.

You don’t have to imag­ine. Th­ese health care pro­fes­sion­als are known as pal­lia­tive care spe­cial­ists. They are ex­perts in help­ing you live with se­ri­ous ill­ness. Pal­lia­tive care can and should be pro­vided from the day of di­ag­no­sis and be of­fered to­gether with med­i­cal in­ter­ven­tions.

My own fam­ily was lucky enough to ben­e­fit from the sup­port of a pal­lia­tive care nurse when my fa­ther faced lung can­cer. She got his pain and nau­sea con­trolled and taught us how to care for him at home. She in­spired me to pur­sue my own ca­reer as a pal­lia­tive care nurse prac­ti­tioner.

But there are not enough of us; right now there is only one pal­lia­tive medicine physi­cian for ev­ery 13,000 pa­tients with se­ri­ous ill­ness, and the re­search sup­port­ing our work is lack­ing. The sci­ence guid­ing your com­fort and well-be­ing should be just as ro­bust as the sci­ence guid­ing your chemo­ther­apy or your blood pres­sure med­i­ca­tions. A bill mak­ing its way through Congress is try­ing to en­sure that this hap­pens.

The Pal­lia­tive Care and Hospice Ed­u­ca­tion and Train­ing Act (PCHETA) au­tho­rizes fed­eral funds to train more health pro­fes­sion­als in pal­lia­tive care knowl­edge and skills. Health care providers of all dis­ci­plines can ben­e­fit from train­ing pro­grams so that my fam­ily’s ex­pe­ri­ence can be­come the rule rather than the ex­cep­tion. Even more im­por­tantly, PCHETA au­tho­rizes con­tin­u­ing ed­u­ca­tion op­por­tu­ni­ties for all health care providers. Most peo­ple with se­ri­ous ill­ness will never meet a pal­lia­tive care spe­cial­ist. But the providers who treat your dis­ease can and should be­come bet­ter at treat­ing ev­ery­thing that comes with it — bet­ter at tak­ing care of the per­son with the dis­ease.

The bill also in­creases fund­ing for re­search, so that when you or your loved one needs pal­lia­tive care, you know the in­ter­ven­tions you re­ceive rep­re­sent the best we can of­fer. Less than 1/100 of 1 per­cent of the bud­get for the Na­tional In­sti­tutes of Health fo­cuses on im­prov­ing qual­ity of life dur­ing se­ri­ous ill­ness.

You can make bet­ter health care a re­al­ity by con­tact­ing your con­gres­sional rep­re­sen­ta­tives and ask­ing them if they have cospon­sored PCHETA. If they have, please thank them. And ask them to bring PCHETA up for a vote. If they have not, share your own story of a loved one who could ben­e­fit from pal­lia­tive care or whose life was changed by a health care provider who paid at­ten­tion to their qual­ity of life. Tell them what pal­lia­tive care means to you.

PCHETA makes it more likely that when your life changes due to a new di­ag­no­sis, some­one will be there to fo­cus on your qual­ity of life. No mat­ter where you live, or what your in­come is, or how well ed­u­cated you are.

Imag­ine that.

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