#Be­causeIMat­ter aims to in­te­grate pal­lia­tive care

Hamil­ton hos­pice cam­paigns to dis­pel myths and mis­in­for­ma­tion about end-of-life care

The Hamilton Spectator - - Comment - CLARE FREE­MAN Clare Free­man is Ex­ec­u­tive Di­rec­tor of Dr. Bob Kemp Hos­pice

Oc­to­ber 13 marks World Hos­pice and Pal­lia­tive Care Day. Hos­pices around the world are en­gag­ing com­mu­ni­ties to get in­volved in this year’s cam­paign #be­causeimat­ter. This year’s theme was in­spired by the words of Cicely Saun­ders, founder of the first hos­pice in the world in 1967, who fa­mously said: “You mat­ter be­cause you are you and you mat­ter un­til the end of your life.”

Hos­pice pal­lia­tive care ap­proaches to liv­ing well ev­ery day with a life-lim­it­ing ill­ness, along with end of life care and be­reave­ment sup­port are rel­a­tively new ap­proaches to health care in Canada and are sur­rounded in mys­tery and mis­in­for­ma­tion.

The #Be­causeimat­ter cam­paign aims to in­te­grate hos­pice pal­lia­tive care into reg­u­lar health care plan­ning and con­tin­uum. A hos­pice pal­lia­tive care ap­proach is per­son-cen­tered care fo­cused on the in­di­vid­ual’s goals of dig­nity to pro­vide ex­cel­lence in pain and symp­tom man­age­ment, ex­cel­lence in per­sonal care sup­ports, ex­cel­lence in so­cial ac­tiv­i­ties and com­mu­nity sup­ports and ex­cel­lence in end of life care and be­reave­ment care. Over 26 years ago, Dr. Bob Kemp and the Hamil­ton Stoney Creek vol­un­teer health group spear­headed Hamil­ton’s first pal­lia­tive care ap­proach to care. To­day, Dr. Bob Kemp Hos­pice con­tin­ues to of­fer well­ness pro­gram­ming, vis­it­ing vol­un­teer ser­vices, ed­u­ca­tion on ad­vance care plan­ning, end of life home-like res­i­den­tial care ser­vices and be­reave­ment ser­vices.

Sadly, most in­di­vid­u­als think that pal­lia­tive care ap­proaches are about giv­ing up, or suc­cumb­ing to death. This could not be fur­ther from re­al­ity. Of­ten when in­di­vid­u­als or fam­i­lies are of­fered pal­lia­tive care, they will say, “No, that is not for me, I am not dy­ing yet.” They will then slowly iso­late them­selves and de­te­ri­o­rate or suf­fer in need­less pain. This will of­ten lead to un­nec­es­sary emer­gency room vis­its, care­giver burnout and cri­sis calls from the fam­ily near end of life. In­di­vid­u­als will also avoid con­ver­sa­tions about their own grief and loss, and thus miss out on cre­at­ing last­ing mem­o­ries that can sup­port their fam­i­lies.

The avoid­ance of plan­ning for death through ad­vance care plan­ning or wills is one of the most dis­turb­ing is­sues. When a per­son’s health is com­pro­mised to the point that they can no longer speak for them­selves, then some­one will need to. This is a very big re­spon­si­bil­ity and one that re­quires many lengthy dis­cus­sions with the per­son. It is so much eas­ier to have these con­ver­sa­tions when our end jour­ney is not in sight ver­sus when it is. In ad­di­tion, af­ter death, the wishes and the es­tate of the per­son will need to be han­dled and again this is some­thing that re­quires a lot of thought and time. The le­gal, fi­nan­cial, spir­i­tual and emo­tional need each one of us has is im­por­tant and it is im­por­tant to com­mu­ni­cate this to those who will live on af­ter us.

Grief and be­reave­ment are of­ten ne­glected and yet they are vi­tal. They need to be re­moved from the shad­ows and in­te­grated into our every­day lives. One mis­con­cep­tion is that pal­lia­tive care only takes care of the pa­tient. Grief and be­reave­ment sup­ports are key to pal­lia­tive care ap­proaches. It is be­cause you mat­ter that hos­pice care needs to be part of your plan­ning con­ver­sa­tions.

The first step in any sort of plan­ning is to get in­formed. There are many groups in our city help­ing peo­ple open up con­ver­sa­tions, such as the 100% Cer­tainty Pro­ject. This pro­gram is run by a group of pro­fes­sion­als in our city who know first hand how pa­tients are af­fected when their fam­ily mem­bers or even they them­selves don’t want to talk about what mat­ters to them. On Oct. 17, this group is host­ing a free pub­lic screen­ing of the “End Game” with a panel dis­cus­sion and a book launch at the David Bra­ley Health Sci­ences Cen­tre.

Over the past year, Dr. Bob Kemp Hos­pice has been of­fer­ing free com­mu­nity ed­u­ca­tional events, ti­tled “Let’s Talk About the End Jour­ney.” This in­ter­ac­tive event gets peo­ple talk­ing about them­selves and learn­ing from oth­ers to dis­pel the myths and fears around end of life con­ver­sa­tions. These work­shops are held in a ca­sual set­ting and pro­vide ed­u­ca­tion on ad­vance care plan­ning and the value of mak­ing this part of reg­u­lar health care plan­ning. Get­ting in­formed will en­sure dig­nity and care is pro­vided for ev­ery­one. Join the #Be­causeimat­ter cam­paign by tweet­ing this out and at­tend­ing Dr. Bob Kemp Hos­pice on Oct. 24 for “Let’s Talk About the End Jour­ney,” hosted at South­cote 53 Tap and Grill, 534 Gar­ner Rd. E., An­caster. To reg­is­ter call (905) 387-2448 ext. 2213

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