As­sisted-sui­cide de­bate fo­cuses at­ten­tion on pal­lia­tive, hospice care

Modern Healthcare - - NEWS - By Lisa Schencker

About once a week, health­care providers call the 24-hour pal­lia­tive-care hot­line at the Uni­ver­sity of Ver­mont Med­i­cal Cen­ter with the same ba­sic ques­tion: How should they re­spond to pa­tients who want to take ad­van­tage of the state’s new law al­low­ing physi­cians to pre­scribe lethal drugs to ter­mi­nally ill pa­tients who want to die?

Dr. Diana Barnard, the hos­pi­tal’s in­terim med­i­cal direc­tor of pal­lia­tive­care ser­vices, sees it as an op­por­tu­nity to help doc­tors ex­plore their dy­ing pa­tients’ con­cerns. She says the law has raised aware­ness about im­prov­ing end-of-life care. The 2013 law “brought with it a whole par­al­lel move­ment to try to more broadly look at the needs of peo­ple fac­ing se­ri­ous ill­nesses at the end of their lives,” said Barnard, a pro- po­nent of physi­cian aid in dy­ing.

Many health­care pro­fes­sion­als and pa­tient ad­vo­cates, re­gard­less of their stance on the emo­tion­ally charged is­sue, hope the re­cently reignited na­tional de­bate over physi­cian-as­sisted sui­cide will boost aware­ness and use of pal­lia­tive care and hospice care. Pal­lia­tive care is pa­tient- and fam­ily-cen­tered care in which an in­ter­dis­ci­pli­nary team fo­cuses on eas­ing pa­tient suf­fer­ing; hospice is pal­lia­tive care de­liv­ered near the end of life.

Some think public dis­cus­sion about le­gal­iza­tion of physi­cian-as­sisted sui­cide has led to the ex­pan­sion of pal­lia­tive and hospice care. Oth­ers don’t see any con­nec­tion.

Be­tween 1994 and 2013, hospice use surged, with 1.5 mil­lion Amer­i­cans re­ceiv­ing hospice care in 2013, com­pared with only 246,000 in 1994, ac­cord­ing to the Na­tional Hospice and Pal­lia­tive Care Or­ga­ni­za­tion. But bar­ri­ers to more wide­spread use of hospice and pal­lia­tive care re­main, in­clud­ing what ex­perts say is in­suf­fi­cient Medi­care re­im­burse­ment for pal­lia­tive care and rules that hin­der pa­tient re­fer­rals to hospice.

Both sup­port­ers and op­po­nents of aid in dy­ing say pal­lia­tive care can im­prove qual­ity of life for suf­fer­ing pa­tients and may re­duce their de­sire to in­gest lethal med­i­ca­tion. But some say there are pa­tients who will still seek the death-with-dig­nity op­tion, re­gard­less of the qual­ity of their care.

Ann Jack­son, for­mer head of the Ore­gon Hospice As­so­ci­a­tion, said Ore­gon vot­ers’ ap­proval of the Death With Dig­nity Act in the 1990s was a “wakeup call” for physi­cians re­gard­ing pal­lia­tive care. In 2014, 93% of ter­mi­nally

ill pa­tients who ended their lives un­der the law were en­rolled in hospice be­fore their deaths, ac­cord­ing to the Ore­gon Health Author­ity.

The po­lit­i­cal battle over aid in dy­ing has raged for decades, hit­ting a crescendo when Ore­gon be­came the first state to le­gal­ize the prac­tice. Two doc­tors must in­de­pen­dently de­ter­mine that pa­tients who re­quest aid in dy­ing have six months or less to live, are men­tally com­pe­tent and are vol­un­tar­ily choos­ing the op­tion. The U.S. Supreme Court ruled in 1997 that there is no con­sti­tu­tional right to physi­cianas­sisted sui­cide, leav­ing the mat­ter up to the states.

Last year, the is­sue shot to na­tional promi­nence, fu­eled by the case of Brit­tany May­nard, a young Cal­i­for­nia woman with brain can­cer who moved to Ore­gon and took a lethal pre­scrip­tion in Novem­ber to end her life. In the months be­fore she died, work­ing with ad­vo­cacy group Com­pas­sion & Choices, she blogged and made videos seen by mil­lions about her rea­sons for seek­ing death with dig­nity.

Since then, law­mak­ers in more than 20 states have in­tro­duced le­gal­iza­tion bills, and law­suits joined by physi­cians have been filed in Cal­i­for­nia and New York chal­leng­ing state laws bar­ring as­sisted sui­cide. In ad­di­tion, Canada’s high­est court re­cently le­gal­ized the prac­tice in that coun­try. Bar­bara Coombs Lee, pres­i­dent of Com­pas­sion & Choices, said she’s never seen so much at­ten­tion on the is­sue.

A Gallup poll last year found that 69% of Amer­i­cans fa­vored al­low­ing doc­tors to “end a pa­tient’s life by some pain­less means,” though that fig­ure dropped to 58% when peo­ple were asked if they sup­ported al­low­ing doc­tors to help in­cur­able pa­tients “com­mit sui­cide.” An on­line sur­vey pub­lished by Med­scape in De­cem­ber found that 54% of re­spond­ing doc­tors said physi­cianas­sisted sui­cide should be al­lowed.

Aid in dy­ing is now legal in five states, in­clud­ing Ore­gon and Wash­ing­ton, where vot­ers ap­proved bal­lot ini­tia­tives; Ver­mont, where the Leg­is­la­ture passed a law; and Mon­tana and New Mex­ico, where it was le­gal­ized as a re­sult of court cases brought by doc­tors and pa­tients.

“In any state in which this would be of­fered to pa­tients, there would re­ally be a moral im­per­a­tive to make sure they’re not choos­ing it be­cause they didn’t re­ceive the best pal­lia­tive care avail­able,” said Dr. Joe Rotella, chief med­i­cal of­fi­cer with the Amer­i­can Academy of Hospice and Pal­lia­tive Medicine, which has a neu­tral po­si­tion on physi­cian-as­sisted sui­cide.

Stud­ies in­di­cate that Ore­gon’s law has led to im­prove­ments in pal­lia­tive and hospice care. Thirty per­cent of Ore­gon doc­tors who re­sponded to a 1999 sur­vey said they had in­creased the num­ber of pa­tients they re­ferred to hospice af­ter vot­ers ap­proved the law. Three-quar­ters of re­spond­ing doc­tors who had cared for ter­mi­nally ill pa­tients said they had worked to im­prove their knowl­edge of pain med­i­ca­tion for those pa­tients, ac­cord­ing to a 2001 ar­ti­cle in JAMA.

But some say the de­bate over physi­cian-as­sisted sui­cide has dis­tracted at­ten­tion from the im­por­tance of im­prov­ing and ex­pand­ing hospice and pal­lia­tive care, even lead­ing peo­ple to equate hospice with aid in dy­ing. “There’s a re­ally big mis­con­cep­tion about what hospice is, and this whole sui­cide de­bate has wors­ened that mis­con­cep­tion,” said Dr. War­ren Fong, pres­i­dent of the Med­i­cal On­col­ogy As­so­ci­a­tion of South­ern Cal­i­for­nia, which op­poses a pending bill in the Cal­i­for­nia Leg­is­la­ture to le­gal­ize physi­cian-as­sisted death. “When peo­ple go on hospice, they think, ‘I’m giv­ing up, I’m fail­ing my fam­ily. I’m com­mit­ting sui­cide.’ It’s not that, it’s just ac­cep­tance that we’re hu­mans.”

Oth­ers doubt that the as­sisted-sui­cide de­bate has been a sig­nif­i­cant fac­tor in the growth of pal­lia­tive care and hospice care. Sep­a­rate from that is­sue, end-of-life care has be­come a hot topic in health­care, with a greater fo­cus on open com­mu­ni­ca­tions, ad­vance di­rec­tives and avoid­ing overtreat­ment of dy­ing pa­tients.

The num­ber of hospice providers grew from 2,312 to 5,800 be­tween 1994 and 2013, ac­cord­ing to the Na­tional Hospice and Pal­lia­tive Care Or­ga­ni­za­tion. Also, the per­cent­age of U.S. hos­pi­tals with more than 50 beds that have pal­lia­tive-care pro­grams grew from 24.5% to 72.3% be­tween 2000 and 2013, ac­cord­ing to the Cen­ter to Ad­vance Pal­lia­tive Care.

“Hospice use has in­creased as the years have passed,” said Deb­o­rah Whit­ing Jaques, CEO of the Ore­gon Hospice As­so­ci­a­tion and ex­ec­u­tive direc­tor of the Wash­ing­ton State Hospice and Pal­lia­tive Care Or­ga­ni­za­tion. “But I don’t link aid in dy­ing with growth in use of hospice ser­vices.”

Ev­ery­one agrees there’s still more room for ex­pan­sion in the use of hospice and pal­lia­tive care. “There are oth­ers who could ben­e­fit from th­ese ser­vices

but still do not re­ceive them for a myr­iad of rea­sons,” said John Mas­tro­john, ex­ec­u­tive vice pres­i­dent of the Na­tional Hospice and Pal­lia­tive Care Or­ga­ni­za­tion.

Some would like to see pa­tients use hospice and pal­lia­tive care ear­lier in their ill­nesses, though there has been con­cern about grow­ing Medi­care hospice costs re­lated to in­ap­pro­pri­ate us­age. The me­dian length of time pa­tients re­ceived hospice care in 2013 was 18.5 days, ac­cord­ing to the Na­tional Hospice and Pal­lia­tive Care Or­ga­ni­za­tion.

Some bar­ri­ers are in­sti­tu­tional. Medi­care pa­tients are el­i­gi­ble for hospice care only when two doc­tors cer­tify that they have six months or less to live— a prog­no­sis that can some­times be dif­fi­cult to make. Physi­cians still are not paid by Medi­care for coun­sel­ing pa­tients on ad­vance di­rec­tives, though there are pro­pos­als to change that. Also, Medi­care pa­tients have to aban­don cu­ra­tive treat­ment be­fore they be­come el­i­gi­ble for the hospice ben­e­fit—forc­ing them into a choice they may not be ready to make.

The lat­ter is an is­sue rec­og­nized by the CMS, which is run­ning a Medi­care demon­stra­tion al­low­ing se­lected hospice providers to of­fer care to ben­e­fi­cia­ries still re­ceiv­ing cu­ra­tive ther­a­pies. The CMS has said it will choose at least 30 ru­ral and ur­ban Medi­care cer­ti­fied and en­rolled hospices to see whether the model leads to im­proved care and greater pa­tient sat­is­fac­tion.

An­other ob­sta­cle to bet­ter pal­lia­tive­care ac­cess is that Medi­care does not of­fer com­pre­hen­sive pay­ment for pal­lia­tive care. A doc­tor in­volved in pal­lia­tive care can bill un­der Medi­care Part B. But most of the rest of the pal­lia­tive­care team—which might in­clude a so­cial worker, chap­lain, phar­ma­cist and oth­ers—gen­er­ally can­not bill, Mas­tro­john said.

De­spite those Medi­care pay­ment poli­cies, many hos­pi­tals have pal­lia­tive-care teams be­cause they rec­og­nize that good pal­lia­tive care can re­duce costs and im­prove qual­ity of care by lead­ing pa­tients to avoid fu­tile care, Rotella said.

Hos­pi­tals with more than 300 beds are more likely to have a pal­lia­tive-care team than smaller hos­pi­tals with fewer than 50 beds. About 88% of larger hos­pi­tals had a pal­lia­tive-care team in 2010, com­pared with about 23% of smaller hos­pi­tals, ac­cord­ing to the Cen­ter to Ad­vance Pal­lia­tive Care.

Some say that re­mov­ing th­ese and other ob­sta­cles to hospice and pal­lia­tive care would re­duce the num­ber of ter­mi­nally ill pa­tients who re­quest physi­cian as­sis­tance in dy­ing. “The med­i­cal sys­tem has cre­ated many of the prob­lems that have led peo­ple to now be­lieve wrongly they need as­sisted-sui­cide op­tions at the end,” said Dr. Aaron Khe­ri­aty, direc­tor of the med­i­cal ethics pro­gram at the Uni­ver­sity of Cal­i­for­nia at Irvine, who op­poses physi­cian-as­sisted sui­cide. “We need to do a bet­ter job of ed­u­cat­ing not just the gen­eral pop­u­la­tion, but also our fel­low physi­cians, many of whom are very ig­no­rant about the whole spe­cialty of pal­lia­tive care.”

But Dr. Howard Gross­man, a plain­tiff in the law­suit to le­gal­ize aid in dy­ing in New York, said he doesn’t be­lieve good end-of-life care and aid in dy­ing should be mu­tu­ally ex­clu­sive. “You can do all the pain con­trol in the world short of putting some­one into a coma, and you could have the most won­der­ful hospice care that pro­vides ev­ery­thing for some­body, and some­one still might not want to go through those last bits of the dy­ing process,” he said.

End-of-life care has be­come a hot topic in health­care, with a greater fo­cus on open com­mu­ni­ca­tion, ad­vance di­rec­tives and avoid­ing overtreat­ment of dy­ing pa­tients.

Pal­lia­tive care in hos­pi­tals grows

Source: Cen­ter to Ad­vance Pal­lia­tive Care

Growth in U.S. hospice pro­grams, 1974-2013

Source: Na­tional Hospice and Pal­lia­tive Care Or­ga­ni­za­tion

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