Time to talk about liv­ing, and dy­ing, well

We’re all about the cure, but in fact, we will die, and you need a plan

The Hamilton Spectator - - COMMENT - CLARE FREEMAN

There are many fears we all live with daily, and one of those fears is hear­ing the words that we or some­one we care about is dy­ing from a life-lim­it­ing ill­ness; like Cancer or ALS.

I re­mem­ber hear­ing these words about 15 years ago. My fam­ily stood there as we heard them say: “You have stage four bone cancer and you have at best a year to live but most likely six months”.

I stood there sob­bing and in shock. How could this be when he walked into his ap­point­ment, and he is work­ing daily.

We thought there must be more that can be done. But the re­al­ity soon sank in. My chil­dren were in mid­dle school at the time when we then learned that it was not just one of their grand­fa­thers that were dy­ing but both.

Within six months both grand­fa­thers were gone be­fore the age of 72 be­cause of cancer. None of us were pre­pared, none of us knew how to talk or plan for a good death and for liv­ing well up to end of life. We missed some im­por­tant mo­ments, but we did the best we could.

Two years ago this May, I took on the lead­er­ship role at Dr. Bob Kemp Hospice. Dr. Bob Kemp him­self was a leader 25 years ago, ad­vo­cat­ing the need for pal­lia­tive care in the com­mu­nity in­clud­ing the need for a res­i­den­tial hospice. His legacy of com­pas­sion and care has in­spired our work and care ever since. What I have come to un­der­stand more clearly is we all need to talk more openly about dy­ing and our wishes at the end of life. As both our med­i­cal di­rec­tors have said to me many times “we are a death pho­bic coun­try”. We talk about the qual­ity of liv­ing well but not the qual­ity of dy­ing a good death.

We talk tough about find­ing a cure, fight­ing and sur­viv­ing dis­eases but then we stop talk­ing when there is no cure. We act as though we have failed. In the UK and Aus­tralia, they are more pro­gres­sive and more open to this dis­cus­sion thus peo­ple can ac­cess ser­vices and sup­ports more openly, and they talk about their end of life care plans. They of­fer bet­ter sup­port to care­givers and their fam­i­lies. They of­fer more in­for­ma­tion, ser­vices and sup­port for the emo­tional process and le­gal process of dy­ing.

Last year over 13,000 peo­ple in Hamil­ton died. Each one of those has friends, col­leagues and fam­ily mem­bers af­fected. Dy­ing and death is truly an is­sue that we will all face.

Ac­cord­ing to the Con­tin­u­ing Care Re­port­ing Sys­tem, in 2014/2015, 62 per cent of pal­lia­tive care pa­tients in Hamil­ton, Ni­a­gara, Hal­ton Brant area died in hos­pi­tal, and 40.5 per cent, or 38,000 Cana­di­ans in On­tario, did not re­ceive any pal­lia­tive care ser­vices. The main rea­son given for this is the ma­jor­ity of us do not know what ser­vices are avail­able to us and what a pal­lia­tive ap­proach means or what it can do for us.

In the past two years, I have had the priv­i­lege of wit­ness­ing a pal­lia­tive care ap­proach, see­ing the ex­per­tise and com­pas­sion that our staff mem­bers and large vol­un­teer team de­liver to pa­tients and their fam­i­lies. Be­cause we pro­vide sup­port to those who are dy­ing from a pro­gres­sive life-lim­it­ing ill­ness such as cancer or ALS.

The folks who come to us are at all stages of life, with the av­er­age age be­ing 71. This year we had a num­ber of peo­ple who were be­tween 40 and 55.

The term ad­vance care is for­eign to many. What peo­ple don’t re­al­ize is that ad­vance care plan­ning can ease the emo­tional, phys­i­cal and le­gal pro­cesses of dy­ing and can help fam­i­lies man­age bet­ter and grieve more openly. Ad­vance care plan­ning is not just about DNR or your med­i­cal di­rec­tive. It is cen­tred around hav­ing con­ver­sa­tions about who in your fam­ily and/or cir­cle of friends will speak for you if you can­not. Who will be your main care­giver? Are they up to the task? Do they fully un­der­stand what is ex­pected of them? What re­sources or ser­vices are avail­able?

We plan for many things in our lives; like the birth of chil­dren, build­ing re­la­tion­ships, buy­ing a house, plan­ning our meals and fit­ness, but we stop talk­ing when it comes to plan­ning for our death. We can change this by start­ing the con­ver­sa­tion in our homes and with our friends.

Join us at Dr Bob Kemp Hospice as we work with our part­ners in the com­mu­nity and you to open this con­ver­sa­tion and to build a com­mu­nity that cel­e­brates liv­ing and dy­ing well. Nurs­ing is an in­te­gral part of pal­lia­tive care; please join us in a salute and thank you dur­ing Na­tional Nurs­ing Week.

Clare Freeman, ex­ec­u­tive di­rec­tor, Dr. Bob Kemp Cen­tre for Hospice Pal­lia­tive Care.

CATHIE COWARD, THE HAMIL­TON SPEC­TA­TOR

Dr. Bob Kemp worked for 25 years on im­prov­ing pal­lia­tive care in On­tario. To­day, a hospice on Stone Church Road near Up­per Welling­ton Street bears his name.

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