Chang­ing the con­ver­sa­tion about pal­lia­tive care

Modern Healthcare - - COMMENT - By Dr. Amy Aber­nethy

Like so many health topics that once were off-lim­its but are now com­mon­place, ev­ery­one sud­denly seems to be dis­cussing hospice and pal­lia­tive care. Ag­ing baby boomers—many jour­nal­ists and blog­gers—are ex­pe­ri­enc­ing se­ri­ous ill­ness or see­ing their par­ents or friends be­come ill. Ac­cus­tomed to be­ing in­formed and dis­cern­ing con­sumers of health­care, they are now open­ing their eyes and ears to in­for­ma­tion about how hospice and pal­lia­tive care might ben­e­fit them.

As an on­col­o­gist and pal­lia­tive medicine specialist who has seen the enor­mous good this type of care can do, I’m heart­ened to see this topic is no longer taboo. But too of­ten, the con­ver­sa­tion misses the point and is framed as a de­bate: Ei­ther you fight your ill­ness with all that mod­ern medicine has to of­fer, or you take the pal­lia­tive care and ac­cept death with dig­nity. It’s time to change the con­ver­sa­tion. Pal­lia­tive care is about choos­ing the treat­ment you want when you’re se­ri­ously ill. That might mean fight­ing with all mod­ern medicine can of­fer and seek­ing pal­lia­tive care to re­lieve symp­toms, im­prove qual­ity of life and pos­si­bly ex­tend life. Or it might mean stop­ping dis­ease-fo­cused treat­ments that are do­ing no good, and per­haps do­ing harm, and seek­ing hospice care to make the time you have as com­fort­able and mean­ing­ful as pos­si­ble.

It’s about choos­ing how to live, not whether to live.

But as pa­tients and doc­tors work­ing to­gether, we should make choices based on sound med­i­cal ev­i­dence. And that’s how the Amer­i­can Board of In­ter­nal Medicine Foun­da­tion’s Choos­ing Wisely pro­gram can help. The goal is to stim­u­late con­ver­sa­tions be­tween pa­tients and doc­tors about com­mon tests and treat­ments that may be harm­ful, un­nec­es­sary or waste­ful. Choos­ing Wisely asks us to ques­tion what is hap­pen­ing, and choose only those tests and treat­ments that are help­ful.

And that is where a new Choos­ing Wisely rec­om­men­da­tion comes in, which states: “Don’t de­lay pal­lia­tive care for a pa­tient with se­ri­ous ill­ness who has phys­i­cal, psy­cho­log­i­cal, so­cial or spir­i­tual dis­tress be­cause they are pur­su­ing dis­ease-di­rected treat­ment.”

In other words, don’t wait un­til the pa­tient’s prog­no­sis is poor, or un­til he or she has stopped be­ing treated for the ill­ness to pro­vide this im­por­tant fo­cus on com­fort. This goes along with the ev­i­dence. Pal­lia­tive care works—it im­proves pain and symp­tom con­trol, im­proves fam­ily sat­is­fac­tion with care and re­duces cost. And stud­ies show that for some pa­tients, pal­lia­tive care helps them live longer.

For ex­am­ple, a study pub­lished in the New Eng­land Jour­nal of Medicine in 2010 re­ported that pa­tients with ad­vanced lung cancer who re­ceived pal­lia­tive care lived al­most three months longer than pa­tients who did not re­ceive pal­lia­tive care, even though the pal­lia­tive group had less-ag­gres­sive cancer treat­ment.

Too of­ten, physi­cians be­lieve their pa­tients aren’t ready. And pa­tients ei­ther don’t know about pal­lia­tive care, or they think it is hospice, or end-of-life care only, and re­sist it for that rea­son. Hospice is ac­tu­ally a spe­cific type of pal­lia­tive care for pa­tients who are not ex­pected to live more than six months. Doc­tors and pa­tients are en­gag­ing in ei­ther/or think­ing. But we are start­ing to see this change and we are es­pe­cially en­cour­aged that other or­ga­ni­za­tions par­tic­i­pat­ing in Choos­ing Wisely also rec­om­mend not de­lay­ing pal­lia­tive care, in­clud­ing cancer spe­cial­ists, emer­gency room physi­cians and crit­i­cal-care doc­tors.

All Choos­ing Wisely rec­om­men­da­tions—and all med­i­cal choices in gen­eral—must be based on re­search-in­formed med­i­cal ev­i­dence. The ev­i­dence sup­port­ing the ef­fec­tive­ness of pal­lia­tive care is mount­ing, but it lags be­hind many other spe­cial­ties, in part be­cause it re­quires ask­ing people with very se­ri­ous ill­nesses to par­tic­i­pate in stud­ies about pal­lia­tive care.

How­ever, we’ve learned that when we do ask them, many do want to par­tic­i­pate and af­ter com­plet­ing one study, of­ten vol­un­teer again. They con­sider it a way to add mean­ing and pur­pose to their lives. Doc­tors and re­searchers can, and must, ad­just the way we con­duct these stud­ies so that the bur­den is as light as it can be: go to pa­tients’ homes in­stead of hav­ing them come to us; keep in­ter­view ses­sions short; and in­volve fam­ily mem­bers. These pa­tients have so much to of­fer us—we owe it to them and to fu­ture pa­tients to lis­ten, to let them help ed­u­cate us and to keep the con­ver­sa­tion go­ing.

Dr. Amy Aber­nethy is di­rec­tor of the Cen­ter for Learn­ing Health Care at the Duke Clin­i­cal Re­search In­sti­tute, and im­me­di­ate past pres­i­dent of the Amer­i­can Academy of Hospice and Pal­lia­tive Medicine.

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