“The key to providing decent palliative care is a little bit of basic planning. Four conditions – cancer, cardiovascular disease, COPD (lung disease) and diabetes – account for 70 per cent of deaths.
Those chronic conditions all have fairly predictable courses of illness in the terminal phase. You don’t get diagnosed with lung cancer or heart failure one day and die the next. It’s a months-long process and providing pain relief (palliation) should be standard, and a priority.
Two in three people receive home care in their last year of life. But only one in seven receive palliative care in the home.
That’s the failure point – and that’s what we need to fix.
There needs to be a commitment – philosophical and financial – to bringing palliative care to patients when they need it and where they want it.
Not everyone can (or should) be cared for at home in their final days. It’s back-breaking, emotionally-draining work for loved ones. Yet many would do so willingly and lovingly.
But they run up against a gross number of barriers, ranging from difficultly getting home visits from physicians (who are poorly remunerated for that work in many provinces), lack of nursing support (because of caps on home care hours), and absurd rules that mean drugs taken at home are not covered by medicare.
All the problems raised by the CIHI report are easily resolved. For example, having paramedics provide palliative care can eliminate transfers to hospitals. Sending doctors and nurses to homes or nursing homes can free up hospital beds – and save money in the process. Not to mention that, at the very least, people deserve a modicum of dignity in their dying days.
The whole point of palliative care is to improve quality of life. We shouldn’t let bureaucratic and structural inadequacies undermine that necessary and noble work.“ by the brilliant André Picard via The Globe and Mail
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"Yet, amidst the storm, some remarkable health professionals create a circle of calm. They go about their work in an unhurried way, finding time to greet their patients, put them at ease, listening deeply and offering kindness and compassion. They don’t neglect their clinical tasks, indeed they seem to get the work done with quiet efficiency. These inspiring workers go home with satisfaction and joy in their hearts. How is that possible?"
Source: Hearts in Healthcare Practising compassion in an uncompassionate health system
"If it’s a certainty that all of us will experience illness, it’s a near-certainty that most of us will care for someone with an illness. But our current conception of patient and disease seems too narrow. It may help to recognize that while patients’ needs come first, illness is often a family affair.
For many, caring for a loved one provides tremendous purpose and fulfillment. It can deepen relationships and offer the time and space for connection where it otherwise might not exist. It seems that the goal, then, should not be to reduce family caregiving, but to reduce its burdens".
"Social work is essential to palliative, end of life and bereavement care. Some social workers deliver specialist palliative care social work; many others encounter people who are close to or at the end of their life, or are becoming or are bereaved. Social workers have a great deal to offer".
"The Canadian Virtual Hospice provides support and personalized information about palliative and end-of-life care to patients, family members, health care providers, researchers and educators."
“We often hear from family members that they find great value in our Guide for Family Caregivers, detailed information on how to handle such common end-of-life symptoms as breathing problems, pain, changes in behavior and sleeplessness. The piece details several signs that may signal a loved one is transitioning from life to death, such as no appetite or urine output, and changes in breathing sounds and patterns.
We encourage people to be a calm presence, to hold the loved ones hand, to call in others who wish to be present, as well as call Hospice for support. Hearing is the final sense to go, so we encourage family members to continue speaking to their loved one, reassuring that everything is all right.
‘What we are trying to do is normalize what they are going through,’ says Joel. Death, after all, is not an aberration but a universal end we all one day meet. ‘We want the family members to know what the very end of life looks like and what they can do when the time comes. What can they do? Literally, just hold your loved one’s hand’.”
In Part 2 of our "Honored Voices" series, we listen to bereaved caregivers and support professionals and what can be learned from their experience. This video is designed for those who are currently supporting caregivers or those who have experienced the loss of a loved one.
"On the first Tuesday of April, Canadians come together to recognize family members, friends, neighbours and other significant people who take on a caring role to support someone with a diminishing physical ability, a debilitating cognitive condition or a chronic life-limiting illness. Known as National Family Caregiver Day or National Carer Day, this special day encourages all Canadians to pay tribute and recognize the valuable contribution of family caregivers to our lives and our society as a whole."#Family
"Compassionate care benefits provide temporary income support to eligible individuals who must be away from work to provide care for a gravely ill family member at risk of death.
Effective January 3, 2016, the enhanced benefit, announced in 2015, allows claimants to collect up to 26 weeks of benefits, up from the current 6 weeks. Further, the period during which benefits can be taken is expanded to 52 weeks (up from 26 weeks). Benefits can be shared between family members.
Eligibility for compassionate care benefits remains the same, including the requirement for a medical certificate signed by a doctor attesting to the family member’s condition".
"The day we learned the news, just 15 months had passed since our wedding on a New Hampshire hillside with friends and children gathered, fireworks exploding and a band backing us up as we performed a duet on a John Prine song and talked about the trips we would take, the olive trees we would plant. Each of us had been divorced almost 25 years. How lucky, everyone said, that we had found each other when we did.
Now, luck means having this operation. In four hours, luck will mean getting a call from a nurse who says: 'They’ve reached the tumor. They’re going in for it'."
“And I had a lot of questions about hospice care, including whether I could stop it if I changed my mind later. (He told me I could stop it at any time, for any reason, and that if I changed my mind again I could resume the services.) The conversation was incredibly stressful. At one point I realized I was holding my breath.
After answering all my questions, Doug looked at me kindly and said, ‘You know, Marie, the real question for the caregiver is how to help the patient have the highest possible quality of life in the time that is remaining.’
That completely changed my thinking about the situation. It gave me a new and positive goal - to bring Ed as much happiness as possible. It led me to think about all the special things I could do for Ed -- visiting him more often, taking my little Shih Tzu to see him, having that violinist come back and play another concert, reading to him from the newspaper, and buying him even more of the stuffed animals he loved so much.”
"When a family member has been diagnosed with Amyotrophic Lateral Sclerosis (ALS) children have many questions and concerns about the person they know and love. We offer these guidelines as a tool to assist your family when talking or sharing information and personal feelings about ALS. You may also want to share this information with other important adults involved in your children’s lives such as teachers and coaches".
“Draw a circle. This is the center ring. In it, put the name of the person at the center of the current trauma... Now draw a larger circle around the first one. In that ring put the name of the person next closest to the trauma... Repeat the process as many times as you need to. In each larger ring put the next closest people. Parents and children before more distant relatives. Intimate friends in smaller rings, less intimate friends in larger ones. When you are done you have a Kvetching Order.
Almost nobody would complain to the patient about how rotten she looks. Almost no one would say that looking at her makes them think of the fragility of life and their own closeness to death. In other words, we know enough not to dump into the center ring. Ring Theory merely expands that intuition and makes it more concrete: Don't just avoid dumping into the center ring, avoid dumping into any ring smaller than your own.
Remember, you can say whatever you want if you just wait until you're talking to someone in a larger ring than yours.
And don't worry. You'll get your turn in the center ring. You can count on that".
"Although some people hope to remain at home for the duration of their illness, many people find that admission to an inpatient setting can also be helpful. The inpatient care settings in the directory include palliative care units, residential hospices and dedicated palliative care beds within local hospitals. Inpatient hospice palliative care support includes 24 hour care, specialist pain and symptom management and psychosocial support for patients and families.
The map provides access to a directory which includes more information about inpatient hospice palliative care settings across Ontario. The list of facilities below may not be complete - there may be hospice palliative care settings which are not in the directory.
For contact information and details about the facility, click on a specific location. If you want more information, contact the hospice or palliative care program directly".
“Emergencies can happen at any time, leaving you too injured or ill to communicate decisions about your medical treatment. MyDirectives helps you create your own emergency medical care plan for your family and doctors so they can make decisions on your behalf".