A ‘good death’

Forum at Quin­nip­iac to fo­cus on plan­ning for end-of-life de­ci­sions

The Middletown Press (Middletown, CT) - - FRONT PAGE - By Ed Stan­nard

When Nancy Yedlin’s fa­ther was dy­ing of can­cer in a New Jersey hos­pi­tal, she and her fam­ily couldn’t have an­tic­i­pated the stress they’d un­dergo as his life neared its end.

“He had an ad­vance di­rec­tive. He had a liv­ing will to say what he wanted or didn’t want at the end of life, and he had can­cer. … But we could not in a fam­ily meet­ing get his on­col­o­gist to talk about pal­lia­tive care or hos­pice,” Yedlin said.

Yedlin, who lives in New Haven, set up a meet­ing with a pal­lia­tive care doc­tor and her fam­ily, but on the day of the meet­ing re­ceived a call that her fa­ther, Bene­dict Yedlin, 81, a belly gun­ner dur­ing World War II, was be­ing moved to in­ten­sive care.

As she, her step­mother, brother, sis­ter and sis­ter-in-law were meet­ing, a code sounded and a med­i­cal team came “run­ning down the hall with this equip­ment go­ing into the ICU,” pre­pared to in­sert a breath­ing tube and open her fa­ther’s chest if his heart stopped.

It was not what Bene­dict Yedlin would have wanted. “He didn’t want any life­pro­long­ing treat­ment if he had a ter­mi­nal ill­ness,” Nancy Yedlin said. “We ba­si­cally said, ‘Don’t do it’ and you could see a lit­tle bit like their shoul­ders slump­ing. This is not what they’re trained to do.

“His breath got re­ally fast and lit­er­ally, (within) three min­utes of us all touch­ing him and be­ing with him, the breath went out of him.”

Yedlin said she would have pre­ferred to have a con­ver­sa­tion with her fa­ther’s doc­tors when he first en­tered the hos­pi­tal. “I think if the pal­lia­tive care physi­cian hadn’t been there at that mo­ment and hadn’t been able to in­ter­ject what she knew about his wishes, I don’t know what would have hap­pened with my dad,” she said.

That ex­pe­ri­ence in 2004 im­pressed on Yedlin the need for fam­ily mem­bers to know what each other’s wishes are and to com­mu­ni­cate them to doc­tors and other care­givers.

“It was prob­a­bly a few years af­ter my fa­ther died that my fam­ily felt com­fort­able talk­ing about what hap­pened,” Yedlin said. “There’s still a stigma that you don’t love your loved one enough if you’re will­ing to honor their wishes.”

When her mother, Rita Yedlin, died in 2016 at age 90, the ex­pe­ri­ence was much dif­fer­ent. “She had a real slow de­cline, but we had a lot of op­por­tu­ni­ties to talk about what she wanted … and we were able to check in with her over the last few years to say, ‘Hey, Mom, are you sure that is what you want?’ ” Nancy Yedlin said.

“She did not want to be trans­ferred to a hos­pi­tal if some­thing acute hap­pened to her. She re­ally just wanted pain man­age­ment at the end of her life and com­fort care where she was liv­ing … and that’s what she had.”

As the hol­i­days ap­proach, the great­est gift peo­ple can give their fam­ily mem­bers is telling them how they­would like to die. To make that gift most worth­while, they should know as much as they can about what their op­tions are, in­clud­ing the avail­abil­ity of pal­lia­tive care and hos­pice care dur­ing a pro­longed or ter­mi­nal ill­ness.

Spread­ing that mes­sage is the goal of Care De­ci­sions Con­necti­cut, a pro­gram be­gun in 2016 by the Con­necti­cut Hos­pi­tal As­so­ci­a­tion to im­prove end-of-life care and qual­ity of life for those with se­ri­ous ill­nesses.

The group — as well as or­ga­ni­za­tions such as the Con­necti­cut As­so­ci­a­tion for Health­care at Home, which rep­re­sents 26 of the 31 hos­pice agen­cies in the state — would like to over­turn mis­con­cep­tions about what pal­lia­tive care and hos­pice are and when pa­tients may turn to them.

To help con­vey the mes­sage that fam­i­lies need to dis­cuss end-of-life de­ci­sions, Care De­ci­sions Con­necti­cut will hold a con­fer­ence Tues­day at Quin­nip­iac Univer­sity fea­tur­ing WNPR’s Colin McEn­roe and ex­perts in the field.

“The is­sue at hand is help­ing in­di­vid­u­als con­tem­plate the type of care that they want at the end of their life be­fore they get to the end of their life,” said Dr. Adam Sil­ver­man, chief pop­u­la­tion health of­fi­cer of Trin­ity Health of New Eng­land and co-chair­man of Care De­ci­sions Con­necti­cut.

But the con­ver­sa­tion shouldn’t be put off un­til a fam­ily mem­ber is fac­ing a ter­mi­nal ill­ness. “It is for any­body at any age to have this con­ver­sa­tion with their loved ones,” said co-chair­woman Karen Mul­vi­hill, a nurse prac­ti­tioner who is net­work di­rec­tor of pal­lia­tive care for the hos­pice con­sor­tium.

Death is a part of life

“I think in the United States, es­pe­cially, it’s im­por­tant to al­ways be young and there’s dis­com­fort to talk­ing about death, and death isn’t con­sid­ered a part of life,” said Tracy Wo­datch, vice pres­i­dent at the Con­necti­cut As­so­ci­a­tion for Health­care at Home, based in Walling­ford. “Learn­ing how to have a con­ver­sa­tion is not just about talk­ing about death but it’s about what’s mean­ing­ful in life and what are your goals.”

“I think that sense of guilt that fam­i­lies feel is that we haven’t so­cial­ized this; we haven’t made it nor­mal, even though we’re all dy­ing from the mo­ment we’re born,” Sil­ver­man said. “There’s this con­cept of the health care provider be­ing the hero,” he said, fed by me­dia por­tray­als of doc­tors “swoop­ing in at the last minute, res­cu­ing some­body from the jaws of death.”

In fact, “there are stud­ies that show that cer­tain pop­u­la­tions of pa­tients that choose a pal­lia­tive ap­proach … ac­tu­ally live longer,” he said.

The best time to talk about one’s treat­ment wishes shouldn’t be in the hos­pi­tal, Wo­datch said. “It shouldn’t be when you have an ill­ness. It should be when you’re healthy,” she said. “Most peo­ple’s con­cep­tions in­clude an old, gray, fee­ble body that has lived a long full life and can still make de­ci­sions on their own.”

Eliz­a­beth Beaudin, se­nior di­rec­tor for pop­u­la­tion health at the Con­necti­cut Hos­pi­tal As­so­ci­a­tion, and fa­cil­i­ta­tor for Care De­ci­sions Con­necti­cut, talked about how her sis­ter, who died of a brain tu­mor at age 37, en­cour­aged her fam­ily to have the dis­cus­sion. “She wanted to talk very di­rectly about death and we were able to do that,” Beaudin said. “She knew ex­actly how she wanted to han­dle things. There were treat­ment op­tions and she didn’t want any of them.”

The abil­ity to dis­cuss how we want to die is “largely about hav­ing con­ver­sa­tions about life and what’s im­por­tant to you ... and that helps guide you in what kind of care you want and how to com­mu­ni­cate that to fam­ily mem­bers and providers,” Beaudin said.

The re­sult, she said, can be a “good death. Some folks would think that’s an oxy­moron,” she said.

Seek­ing care sooner

Avoid­ing talk­ing about death keeps fam­i­lies and doc­tors from bring­ing up the op­tions of pal­lia­tive and hos­pice care, with too many be­liev­ing them avail­able only at the very end of life.

A re­cent Yale School of Medicine study found that many pa­tients had less than two weeks to live when hos­pice care was en­listed, and that qual­ity of life would be im­proved if hos­pice was called in sooner. (Medi­care cov­ers hos­pice care when a pa­tient has a life ex­pectancy of six months or less.)

Ac­cord­ing to a re­port by Hos­pice An­a­lyt­ics of Colorado Springs, Colorado, Con­necti­cut ranks last in length of stay in hos­pice care, with 36 per­cent stay­ing less than seven days.

Care De­ci­sions Con­necti­cut’s goal is “to em­power peo­ple to make de­ci­sions that are im­por­tant to them,” Wo­datch said. Ac­cord­ing to an­other study, “80 per­cent of peo­ple say if they’re se­ri­ously ill they would want to talk to their doc­tor about med­i­cal treat­ment to­ward end of life. Seven per­cent re­port hav­ing had the con­ver­sa­tion with their doc­tor.”

She said there is a billing code doc­tors can use when a pa­tient makes an ap­point­ment to talk about end-oflife care, so that it’s cov­ered by in­sur­ance.

“When it comes to get­ting pal­lia­tive care in­volved … gen­er­ally the physi­cians are wait­ing for the fam­i­lies to ask … and the fam­i­lies a lot of times are wait­ing for the physi­cian to have that con­ver­sa­tion,” Mul­vi­hill said.

“Fam­i­lies or physi­cians still think that pal­lia­tive care is hos­pice care and they’re one and the same, so they’re afraid to bring up the word ‘pal­lia­tive care’ be­cause they think ‘hos­pice,’” she said.

Hos­pice care, which may be of­fered at home, in a health care fa­cil­ity or at a stand­alone agency such as Con­necti­cut Hos­pice in Bran­ford, in­volves a team that may in­clude doc­tors, nurses, aides, a chap­lain, a so­cial worker and vol­un­teers, “all with a fo­cus of help­ing the pa­tient and the fam­ily, and it’s about qual­ity of life,” Wo datch said. “Pal­lia­tive care should come much ear­lier” to treat the side ef­fects of can­cer treat­ments, for ex­am­ple, she said.

“I think one of the roles of hav­ing pal­lia­tive care in­volved early in the di­ag­no­sis of a se­ri­ous ill­ness is re­ally to make sure that hos­pice re­fer­ral is made at an ap­pro­pri­ate time and not too late,” Mul­vi­hill said. “So when the time comes, they’re not scared to go into hos­pice.”

The im­por­tant point is that the pa­tient’s wishes be hon­ored, whether they in­clude want­ing ev­ery­thing pos­si­ble done to keep them alive or a do-not-re­sus­ci­tate or­der.

“We’re not push­ing one de­ci­sion over an­other,” Sil­ver­man said. “We all have pa­tients who come to us and say, ‘Hey, I want you to do ev­ery­thing,’ and we’ll do ev­ery­thing un­less it be­comes fu­tile or we’re do­ing harm to the pa­tient.”

One op­tion avail­able to pa­tients is a pal­lia­tive care physi­cian, who spe­cial­izes in pain man­age­ment and keep­ing a pa­tient com­fort­able, whether the pa­tient is suf­fer­ing a ter­mi­nal ill­ness or is sim­ply suf­fer­ing from in­tense pain.

“There’s re­ally no rea­son that some­body who’s crit­i­cally ill, whether they’re dy­ing or not … that the pal­lia­tive care physi­cian shouldn’t be part of the con­ver­sa­tion,” Yedlin said. “We had to use our own kind of net­works to in­volve the pal­lia­tive care doc­tor.”

Tak­ing ac­tion

Once de­ci­sions are made, an ad­vance health care di­rec­tive, or “liv­ing will,” should be cre­ated and a health care rep­re­sen­ta­tive ap­pointed whom the pa­tient trusts to fol­low his or her wishes. Nei­ther re­quires a lawyer and forms can be found on the state at­tor­ney gen­eral’s web­site. Fam­ily mem­bers and doc­tors should have a copy.

There is also a new form, Med­i­cal Or­ders for Life-Sus­tain­ing Treat­ment, that is signed by a physi­cian and con­tains the pa­tient’s di­rec­tives in a stan­dard­ized form. In­for­ma­tion on MOLST can be found on the state De­part­ment of Pub­lic Health’s web­site.

The Care De­ci­sions Con­necti­cut forum will be held at the Frank H. Net­ter MD School of Medicine at Quin­nip­iac Univer­sity start­ing at 11 a.m. Tues­day. It is free and open to the pub­lic. Regis­ter at www.CareDe­ci­sion­sCT.org.

In ad­di­tion to McEn­roe, who will share per­sonal sto­ries about peo­ple’s endof-life de­ci­sions, the Rev. Rose­mary Lloyd, ad­viser to faith com­mu­ni­ties for the Con­ver­sa­tion Project at the In­sti­tute for Health Care Im­prove­ment, will dis­cuss how values should be in­cor­po­rated into end-of-life de­ci­sions, and Pro­bate Judge John J. McGrath Jr. of the Wind­ham-Colch­ester pro­bate district in Wil­li­man­tic, will join a ques­tio­nand-an­swer ses­sion.

Arnold Gold / Hearst Con­necti­cut Me­dia

Eliz­a­beth Beaudin, left, fa­cil­i­ta­tor of Care De­ci­sions Con­necti­cut, speaks in Walling­ford about pal­lia­tive care.

Arnold Gold / Hearst Con­necti­cut Me­dia file photo

Nancy Yedlin, right, of New Haven, speaks about her ex­pe­ri­ence with pal­lia­tive care for her fa­ther at the end of his life dur­ing an in­ter­view at the Con­necti­cut Hos­pi­tal As­so­ci­a­tion in Walling­ford on Oct. 31.

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