De­cid­ing how to live out your fi­nal days

An Ad­vanced Care Direc­tive, or a liv­ing will, al­lows us to make de­ci­sions now about our fu­ture health­care, says Mar­garet Jen­nings

Irish Examiner - Feelgood - - Ageing With Attitude -

IT may be an is­sue we avoid think­ing about too much, and it cer­tainly isn’t a chirpy din­ner party con­ver­sa­tion topic, but un­der­neath the sur­face of­ten lurks the fear— as we get into our later decades — that we may be un­able to make choices about our end-of-life health­care, due to in­ca­pac­ity.

Over the past 50 years medicine has ad­vanced at such an amaz­ing rate that we have de­vel­oped an abil­ity to re­sist and post­pone death in many new and com­pli­cated ways, says Pro­fes­sor Wil­lie Mol­loy, geri­a­tri­cian and chair in clin­i­cal geron­tol­ogy at Uni­ver­sity Col­lege Cork.

“Health­care pro­fes­sion­als are stuck with such poli­cies that they have to treat peo­ple no mat­ter what. All these peo­ple are dy­ing and the pol­icy says ev­ery­body has to have CPR,” he says.

But what would you, the pa­tient, want for your­self in such cir­cum­stances if you were com­pe­tent? And do you ever spare a thought for those close to you who could be left in highly emo­tional cir­cum­stances with the re­spon­si­bil­ity to make de­ci­sions, due to your in­abil­ity to com­mu­ni­cate your de­sires?

While as a so­ci­ety we recog­nise the need to make a le­gal will, to out­line our wishes about dis­tri­bu­tion of our pos­ses­sions af­ter death, the idea of ex­press­ing our health­care de­sires in ad­vance, is not too far re­moved then, from that con­cept.

En­ter the Ad­vance Care Direc­tive (ACD), a type of Liv­ing Will, a writ­ten state­ment that we can make now — while we are able — about our health­care, for a time in the fu­ture when we may no longer be able to com­mu­ni­cate our de­sires.

Such an ACD, called Let me De­cide, which fea­tures in an ex­plana­tory book of that name, has sold over 1 mil­lion copies glob­ally and was pro­duced af­ter many years of re­search by the UCC pro­fes­sor.

“It’s an in­struc­tional direc­tive which al­lows you to state in ad­vance what treat­ments you want or don’t want, which doc­tors and fam­ily can fol­low. But you can also have a proxy direc­tive, nom­i­nat­ing a per­son with the au­thor­ity to de­cide the kind of treat­ment you should re­ceive in health­care and per­sonal care, like a power of at­tor­ney for health­care, who can act on our be­half,” says Wil­lie.

“It em­pow­ers the per­son to make their de­ci­sions and takes the fam­ily off the hook so the fam­ily are not stuck with these de­ci­sions, which is aw­ful for the fam­ily. It can di­vide fam­i­lies; it can cause ter­ri­ble fights.

“It also takes the health­care pro­fes­sion­als off the hook and the per­son’s death is bet­ter planned. In nurs­ing homes, we have found that if you have the pro­gramme in, you are more likely to die with a fam­ily mem­ber if you have used Let Me De­cide — and the care is fab­u­lous.”

On­go­ing re­search is be­ing car­ried by UCC re­gard­ing the ADC in com­mu­nity hos­pi­tals and in home­care set­tings in Ire­land, he says. At St Lukes Home in Cork where Let Me De­cide has been avail­able for res­i­dents since 2010, there has been an en­thu­si­as­tic re­sponse. “Ev­ery sin­gle res­i­dent is of­fered it and it is their choice to ac­cept Let Me De­cide into their care plan or not to ac­cept it,” says di­rec­tor of nurs­ing there, Neil Mac Kay.

“Our cur­rent up­take is in the re­gion of 90% and has re­mained con­sis­tent through­out. Let Me De­cide en­ables the res­i­dent to re­tain au­ton­omy in their de­ci­sions re­gard­ing their med­i­cal and nurs­ing care whilst liv­ing in the nurs­ing home and also if they wish to seek hos­pi­tal care,” he tells Feel­good.

“On trans­fer to hos­pi­tal care - if that is their choice, then a copy of the ACD is given to the res­i­dent to take with them to hos­pi­tal and this fur­ther em­pow­ers and in­forms the re­ceiv­ing health­care team of the res­i­dent’s de­ci­sions. It em­pow­ers the per­son to choose what and how they wish to re­ceive treat­ment.”

The ADC val­ues the per­son’s choice and de­ci­sions pre­dom­i­nantly at the pal­lia­tive stages of their lives, but equally, in all deci- sions the res­i­dent wishes to make in re­gards to their health­care de­ci­sions and choices, adds Neil.

Mean­while, the home care ser­vice provider, Home In­stead Se­nior Care, is cur­rently work­ing close with UCC in pi­lot­ing the Let Me De­cide ini­tia­tive in Tip­per­ary.

“Our ex­per­tise has given us a deep un­der­stand­ing of the con­cerns of our grow­ing age­ing com­mu­nity, and ranked high among them is worry over what might hap­pen to them if they are no longer able to make their own de­ci­sions over their treat­ment and care,” says Michael Wright, manag­ing di­rec­tor of Home In­stead Se­nior Care in Tip­per­ary.

“With Let me De­cide, clients have told me how com­fort­ing it is know­ing de­ci­sions have been made in ad­vance of time and that these de­ci­sions won’t be left to their adult chil­dren,” he says.

If the an­tic­i­pated re­sults emerge from the pilot pro­gramme then Home In­stead Se­nior Care would like to see the pro­gramme rolled out na­tion­wide, he added.

More in­for­ma­tion on the Ad­vance Care Direc­tive and the ex­plana­tory book Let Me De­cide, which in­cludes the direc­tive, can be found at http://www.letmede­cide.org/

Pic­ture: iStock

HAND­ING OVER: Pa­tients can also have a proxy direc­tive, giv­ing a named per­son the right to de­cide their treat­ment and health­care plan.

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