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Palliative care experts say it's time for Canadians to talk about end of life care 
Créé par JennJilks
17 nov. 2014, 20 h 56

It's time for change: read more here.

What is it you hope for in your life?


  • Creativity? 
  • Being outdoors?
  • Happiness: what does that look like? 
  • Productivity: what would you like to accomplish? 
  • Friends: do you want to be with them? 
  • Do you prefer being solitary, with books and music?
  • Do you have things to do, things to see, people to love?

These are the questions physicians must ask their patients

  • What is your understanding of your condition?
  • What are we working towards? 
  • Which goals do you aspire to: i.e., being social, being able to drink beer and watch TV, being ambulatory and mobile, being able to communicate with family and friends, or read a book? 
  • What are your fears, and your worries?
 
Réponse de Xenia
26 nov. 2014, 0 h 24

The questions to be asked by the physician does not cover a lot of territory.

The last question> What are your fears, and your worries.

Most palliative care patients are worried about the cost of having to be in palliative care, what is the next step, when is it time to move to a care facilities or to hospice.  Who will care for me other than my significant other, wife or partner.

Children if you are lucky to have caring ones will care for you for a while but have their own lives.  Where does the government funding come in for help for the palliative care patient who has paid into medical and taxes for years.

There needs to be more doctors who are taught palliative care and this is hard as not too many physiicans like to work with the aging population. They take too much time and the returns are not as great as a physician specializing in other fields in medicine.

I may sound cynical but I feel that often families and the sick person resorts to thinking end of life as the burdens of being care for or caring for an ill parent or partner is overwhelming and there is no one to turn to.

Religous people are so santimonoius and I have worked in a care facility and do not see many of them volunteering their time to help the very ill just by giving families repite.

I trust this will bring up discussion as at this time I am going through palliative care with my husband and not knowing what the next step will be and at what time it will be to think about care outside the home and where he will end up as there are so few care homes and many are out of reach in the city one lives in.

Trust we will have some feed back on this.

Regards

Xenia



 
 
Réponse de JennJilks
26 nov. 2014, 13 h 23

Xenia, I think it important to distinguish palliative vs. hospice care.
I believe in Canada that palliative care is a way to care for a patient, a philosophy. In the US you have to qualify for it, for funding.

Hospice organisations, some have actual buildings, others have dedicated room in hospitals, or an office which co-ordinates support, separate from government healthcare services.
Hospices will send volunteers, advocate with and for you, and provide respite.

Palliative care means treating the patient with dignity and respect, comfort measures, rather than active treatment. Doctors are notoriously bad managing patients at the stage of life.They should make house calls, but many do not. It ends up with the nurse asking the doctor for meds she thinks the patient should have.

Victoria Hospice, in BC, is a fabulous groups. They are one of the strongest advocates, with many services.

 We have a dedicated group of 85 hospice volunteers in my small town of 9,000. 

HOSPICE PALLIATIVE CARE IN CANADA
 In 2010/2011 Hospice volunteers gave more than 700,000 hour of care to over 21,000 individuals receiving hospice palliative care at home. Hospice volunteers provide emotional and physical care to the dying and emotional support and respite to family caregivers. Hospice volunteers also provide bereavement support to both patients and families before death and to families after the death of their loved one. 
 
Réponse de Xenia
26 nov. 2014, 17 h 30

Good Morning Jenn:

Of course, we are aware that palliative care and hospice care is different.  Again, there are times when a palliative care patient needs to go to hospice care.  Here in B.C. hospice care is determined on your income.  At present the cost for us is $31.oo per day.

That I don;t mind paying as should I need the service it would be great, however, often there is not room for a hospice patient near their home and need to go many miles away and ;this is very hard on the caregiver.  Relinquiching the care and then not being able to have the patient near is very hard.

Yes, Palliative care is wonderful.  Our doctor came over last night.  Spent l 1/2 hours here.  We went through husbands's med, etc.  He checked him out and once again as you state, palliative care is to make the patient comfortable either through increased medication to ease the pain and make life easier for the patient.

Regarding volunteers, you are truly blessed that you have so many volunteers.  When I speak of religious people I speak of those who feel that death with dignity is against God's will.  I am not being confrontational, however, when one decides to end one's life there is such an uproar from certain citizens who feel they should intervene.  What we look at is that if we believe in a higher power we will answer to him/her not people on earth who choose to speak against death with dignity.

Back to Palliative care, the Physicians held a conference in Ontario a few months ago and stated that they were asking the government to help provide more palliative care, especially with the aging population, since then there has been no more informaiton on the doctor's voice in this matter or whether the government will really fund more palliative care.  Here in B.C. the need for palliative care nurses is horrendous, many patients being discharged home without any follow up or having palliative care.

The arguments are many and I may seem like I am on a soap box, however, having worked in a Care facility, in a large hospital and now caregiving to my husband, I am quite aware of the problems faced by doctors, nurses, all the health care people who have their hands tied by political governments and as such the patient suffers.

Thanks again for letting this come to the surface and let us all have a discussion on palliative care by the family caregiver and how they need help and are now helping the govrnment not being responsible for care of the elderly.  I know we are the government (joke) but we do not hold the purse strings.

Take care.  Off to pick up new meds dr. ordered last nite.  We have one doctor in a million who visits.

Xenia 
 
Réponse de JennJilks
30 nov. 2014, 14 h 53

This is an excellent resource webinar for EOD.


Adriana Shnall, PhD, RSW 
 
Réponse de KathCull_admin
23 janv. 2015, 19 h 44

Hello Xenia and JennJilks
Nouce started a new thread Report on stress of family caregivers   Would you ladies have the opportunity to look at her question – I thought if anyone knows you would.


Thanks for considering this request.


Katherine
 
Réponse de KathCull_admin
24 janv. 2016, 4 h 22

Palliative care may not always meet our expectations and the services offered by palliative care are not the same across Canada. 

Kristie on What does hospice and palliative care mean to you?  wrote, “I asked if he could get some counselling to help him, and I was told point blank that there was nothing offered for "people in his condition".  All they did was up his anti-anxiety meds, and keep him pretty knocked out.  He did not want that - he said he only had limited time and he did not want to sleep it away - he wanted to be there for his family.” 

Springday posted earlier on that same thread, “it is horrible to see her suffer like this...and my perception is that they are just leaving her to die...so I have really mixed feeling about hospice right now.”

What support or suggestions would you offer?
Katherine


 
 
Réponse de JennJilks
24 janv. 2016, 15 h 03

I've been writing about this issue for years. Firstly, we need to differentiate hospice from palliative care. As well, hospice can be a place, or a treatment plan.

My volunteer agency has replaced me as newsletter editor, with a couple of women who do social media for agencies. Does it ever get me angry. They know nothing of the issues. They publish dippy articles and use stock photos on the web page.
Agencies, like mine, are more concerned with getting donations than helping volunteers advocate for clients. We won't have Canadians having a good death unless we take action. I wrote my book, for which I could get little press, dealing with this.
I write and blog about these issues, but all the attention I get are requests for free ads from publicists hired to promote a product or person.
We need to have patient advocates.
 Patient navigators, frail seniors

When a patient is declared palliative - what do you need to know?

I sent them two articles: This is another issue. 

My client told me that Broadview has been closed to visitors.They even hustled her loved ones out of the home, where they were visiting her 95-year-old sister.  It's illegal without an order from the health department. These issues must be reported. Visitors and volunteers should know.

http://ontarioseniors.blogspot.ca/2009/06/ltc-bill-of-rights.html 

Closing a retirement home or Long-Term Care due to flu is illegal without reporting it. Know your rights! http://bit.ly/1n9FNY3 


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