“My sister’s advance care plan was simple – she wanted to be at home with her family around her.  That was it. Not in hospital, not in a swirl of chaos in an emergency department …we worked with her team to make it happen that way.”

“La planification de soins anticipés de ma sœur était simple : elle voulait être à la maison avec sa famille autour d’elle. C’était tout. Pas à l’hôpital, pas dans le tourbillon chaotique de l’urgence… nous avons travaillé avec son équipe pour y arriver de cette façon.”

“We knew what we wanted, but we didn’t know how to make everyone else know.”

“Nous savions ce que nous voulions, mais nous ne savions pas comment faire savoir à tout le monde.”

“If a person can die at home in one province, shouldn’t they be able to just the same somewhere else?”

“Si une personne peut mourir chez elle dans une province, les autres ne devraient-ils pas pouvoir faire la même chose partout ailleurs?”

“It’s crazy, my Mom  and Dad lived and died less than a hundred and fifty kilometers apart and it was all completely different.”

“C’est fou, ma mère et mon père ont vécu et sont morts à moins de cent cinquante kilomètres de différence et c’était tout à fait différent”

“As a same sex couple, I can say I felt respected and the relationship was valued for what it was. Just like every other couple in home care.”

“En tant que couple de même sexe, je peux dire que je me sentais respecté et la relation a été valorisée pour ce qu’elle était.  Comme tous les autres couples en soins à domicile”

“After my husband’s death, no  one seemed the least bit interested in the fact that I still had some very dangerous prescription medications in my home.”

“Après la mort de mon mari, personne ne semblait soucieux  par le fait que j’avais encore des médicaments très dangereux chez moi.”

“[We] did not know what to have, where to get it, when. Or even who was responsible for the purchases or from where.”

“[Nous] ne savions pas quoi avoir, où aller et quand. Ou même qui était responsable des achats et d’où.”

“Six weeks after my  sister died, my brother-in-law still couldn’t get into his garage.  It was full of equipment he moved out of the house, so he didn’t have to face it  every day.”

“Six semaines après le décès de ma sœur, mon beau-frère ne pouvait toujours pas entrer dans son garage. C’était plein d’équipements qu’il a sortis de la maison pour ne pas y faire face à tous les jours.”

“It is very difficult when a loved one is in and out of lucidity. I represented his wishes most often and felt that my voice was not being listened to by the frontline team. The caregivers voice should be a primary concern of the palliative team in situations such as this.”

“C’est très difficile quand la lucidité d’un être cher va et vient. J’exprimais ses souhaits le plus souvent possible mais je sentais que mon opinion n’était pas écoutée par l’équipe traitante. La voix des proches aidants devrait être une préoccupation majeure de l’équipe de soins palliatifs dans de telles situations.”

“They listened to me. They understood—I knew what  my husband wanted. If they didn’t understand,  they asked. We all agreed.”

“Ils m’ont écouté. Ils ont compris.  Je savais ce que mon mari voulait. S’ils ne comprenaient pas, ils demandaient. Nous étions tous d’accord.”

“Le plan était bien pensé et en théorie, c’était un bon plan. L’exécution et la dispensation des soins n’étaient pas à la hauteur.”

“Night time was always when I needed the help. I felt like I was alone in a life raft with the sharks circling at night.”

“La nuit était toujours quand j’avais besoin de l’aide. Je me sentais comme seule dans un radeau de sauvetage avec les requins nageant autour, en pleine nuit.”

“I couldn’t help my husband because I didn’t know how to even help myself.”

“Je ne pouvais pas aider mon mari parce que je ne savais même pas comment m’aider moi-même.”

“ We needed the information about what to expect, what our choices could be, what was available sooner than later, earlier rather than half way through or at the end.”

“ Nous avions besoin d’information sur ce à quoi s’attendre, ce qui pourraient être nos choix, ce qui était disponible le plus tôt que tard, plus tôt qu’en mi-parcours ou à la fin.”

“There was no care team. We rarely had the same nurse in hospital nor in the community. We were always dealing with strangers.”

“Il n’y avait pas d’équipe de soins. Nous avons rarement eu la même infirmière à l’hôpital ni dans la communauté. Nous avons toujours eu affaire à des étrangers.”

“I think more information needs to be provided around what end of life can look like, what are the options
for care, what supports are available. How can people make informed choices without a full picture?”

“Je pense que davantage d’informations doivent être fournies sur ce à quoi peut ressembler la fin de vie, quelles sont les options de soins, quelles ressources sont disponibles. Comment les gens peuvent-ils faire des choix éclairés sans toute l’information?”

“Many of us in rural and urban centres are not offered care and certainly not end-of-life planning.
Our loved ones die in hospital often without any referral to palliative care.”

“Beaucoup d’entre nous, dans les centres urbains et ruraux, ne se voient pas offrir de soins et surtout pas de planification de fin de vie. Nos proches décèdent souvent à l’hôpital sans aucune référence aux soins palliatifs.”

Experiences in Sharing and Responding to Advance Care Plans

We reached out to caregivers, patients and palliative care providers to learn how individual’s advance care plan wishes are influencing care planning and delivery.  We asked what is going well and what needs to be improved.  We gathered all the feedback and suggestions and created an Experience Map to visually show where improvement is needed for home-based palliative care, so that everyone has their wishes heard, respected and acted upon.

Caregivers’ Experiences of Palliative Care in Canada.

SUPPORTING CARERS

Click on the logos below for resources and information to support caregivers’ experiences of palliative care in Canada.

I am a Carer!

CANES Community Care
Carepartners
Circle of Care
Alzheimer Society of Canada
Bayshore Home Health
Closing the Gap Healthcare
VON Canada
SE Health
Spectrum Health Care
VHA Home HealthCare
Fraser Health Authority

I am a Provider!

Acclaim Health

WEBINAR

Caregivers’ Experiences of Palliative Care in Canada

Involving caregivers in home-based palliative care is essential. Engaging their expertise and knowledge in advance care planning, early assessment and service delivery, managing equipment and medications, and ensuring effective communication, is vital.

Carers Canada’s webinar for National Carers Day provided participants with insight into a national initiative to build operational excellence in home-based palliative care, and the opportunity to learn about the information tool to support caregivers, ‘When Someone Close To You Is Dying’.

Minister’s Statement in Recognition of Carers

“Today is National Carers Day. It is a day to recognize family members, friends, neighbours and other significant people who have taken on the role of caregiver for someone with a serious or life-threatening illness…… I encourage Canadians to take the time today to recognize and thank all the compassionate people in their life who have caregiver roles.”

The Honourable Ginette Petitpas Taylor, P.C., M.P.
Minister of Health

Read the full Minister Petitpas Taylor’s message here: ENG/FR
Learn more about what the Ministry is doing to support carers

“On this National Carers Day, I want to thank all caregivers for the tremendous work they do every day to improve the quality of life of countless older Canadians and for making sure they receive the very important care they deserve as they age.”

The Honourable Filomena Tassi, P.C., M.P.
Minister of Seniors

Read the full Minister Tassi’s message here: ENG/FR
Learn more about what the Ministry is doing to support carers

For 2019 National Carers Day, we are increasing awareness on the vital role of caregivers and supports available to enhance Caregivers’ Experiences of Palliative Care in Canada. The theme this year reinforces a national health care policy priority “how palliative care is provided in Canada” and builds on the December 2018 release of the Framework on Palliative Care in Canada. Together, let’s recognize caregivers in your life and do our part to support them to be healthy and connected.

#NationalCarersDay

ABOUT NATIONAL CARERS DAY

In April 2010, the Parliament of Canada unanimously adopted a motion declaring the first Tuesday in April “The Invisible Work Day.” This day was designated to recognize the importance of the “invisible” unpaid work carried out by parents and caregivers on behalf of their children and aging family members, as well as the volunteer work done in the community.  Recognizing that caregivers come from all walks of life and take on many roles, the first Tuesday in April is a special day where we can recognize all caring Canadians.

A milestone for Canadian Carers

Prime Minister’s Statement in Recognition of Carers

2018 National Carers Day

Connecting Carers was a campaign to raise awareness of carers’ needs and the importance of connecting and accessing support earlier rather than later in their care journeys. 

2017 National Carers Day

Carers Canada celebrated National Carers Day on April 3, 2017. This year’s theme “Caring at Home” aims to raise awareness of the invaluable role carers provide to support older adults with frailty, individuals with complex, chronic disabling conditions, and those at end-of-life to stay safely at home. 

2016 National Carers Day

In 2016, Carers Canada celebrated National Carers Day on April 5. Through our “Because I Care – Recognizing Caring Canadians” campaign, we built awareness and reinforced the diversity of ‘caring’ Canadians. Over 150 individuals and organizations added their name to our Caring Wall to visibly showed their support for caring moms, dads, sisters, brothers, spouses, friends, family and neighbours who make a difference in the lives of their loved ones every day. Download Press Release

2015 National Carers Day

In 2015, the Canadian Caregiver Coalition celebrated National Family Caregiver Day on April 7. Our theme was Care & Work: A Balancing Act in recognition of the 6.1 million Canadians who must balance their personal commitments, caregiving duties and work responsibilities. Download the CCC press release

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