Planning for a ‘good death’

New Haven Register (New Haven, 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 would 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 life-pro­long­ing 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 we might give our fam­ily mem­bers is to tell them how we would like to die, ac­cord­ing to ad­vo­cates for im­prov­ing end-of-life care. To make that gift most worth­while, we should know as much as we can about what our 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, Nov. 14 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 of 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 our wishes for treat­ment 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, said 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 op­tions of pal­lia­tive and hos­pice care, with too many peo­ple think­ing of them as avail­able only at the very end of life.

A re­cent Yale School of Medicine study found many pa­tients had less than two weeks to live when hos­pice care was en­listed, and qual­ity of life would be im­proved if hos­pice were 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, Colo., 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-of-life care, so 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,” Wo­datch 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 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 a 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 will be held at the Frank H. Net­ter MD School of Medicine at Quin­nip­iac Univer­sity start­ing at 11 a.m. Nov. 14. It is free and open to the pub­lic. Regis­ter at CareDe­ci­sion­sCT.org. In ad­di­tion to McEn­roe, who will share per­sonal sto­ries about peo­ple’s end-oflife 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 ques­tion-and-an­swer ses­sion.

Arnold Gold / Hearst Connecticut Me­dia

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

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