Hospice

When the #Patient Won’t Ever Get Better @danielalamasmd #hpm #ACP

“In the early moments of critical illness, the choices seem relatively simple, the stakes high – you live or you die. But the chronically critically ill inhabit a kind of in-between purgatory state, all uncertainty and lingering. How do we explain this to families just as they breathe a sigh of relief that their loved one hasn’t died? Should we use the words “chronic critical illness”? Would it change any decisions if we were to do so? Here, I find that I am often at a loss.

I was quiet on the other end of the phone line that night. Was my patient stable? For the moment, she was. But with each event like this one, and there would be more, my patient would move further from the hope of ever reclaiming that life she had had in the fall: living in her own home, watching movies, cooking. I felt that I could see the weeks and months spooling out, a moment of calm, a new emergency. But this wasn’t the time to tell her daughter, not on the phone, not tonight.

And so I told her the truth – one truth, at least. Her mother was critically ill, but stable for the night”.

@CanadianHPCAssn #National #Hospice #Palliative Care Week Busting the #Myths #hpm

National Hospice Palliative Care Week will run May 1-7, 2016 under the theme Hospice Palliative Care First and features an FAQ, Mythbusters, and includes information for health care professionals.

"There are many ways to start the conversation about end-of-life care in Canada. Spreading awareness and education is one of the best ways to advocate for change and ensure that every Canadian has access to quality hospice palliative care.

Visit the official Advance Care Planning website at www.advancecareplanning.ca for resources to share and distribute.

Learn about the integrated palliative approach to care developed by the Way Forward project at www.nationalframework.ca

Use the “Power of 10” materials developed by the Canadian Hospice Palliative Care Association to spread the word about hospice palliative care in your communities. These materials can be found here: www.chpca.net/week

Spread the materials developed for this year’s campaign “Hospice Palliative Care First” found here: www.chpca.net/hpcfirst "

Important Conversations with Experts in the Field about #Dying and #Death. #hpm

Important conversation about supporting quality of life and the need for universal access to Palliative Care - the comprehensive care supporting individuals and families facing a life-limiting illness from time of diagnosis to end-of-life and into bereavement.

The role of #Social #Workers in #Palliative, #end of life and #bereavement care. #hpm

"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". 

#Canadian Virtual #Hospice. Information and #Support on #Palliative and #End-of-Life #Care, #Loss and #Grief. @VirtualHospice

"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."

Observing the Wish to #Die at #Home. #hpm

“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’.”

#Memories of a #Caregiver - Honoring Voices: Walking Alongside The #Caregiver. #hpm

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.

Why we need better #end-of-life #policies in #seniors’ residences. #LTC

“How we die is regularly in the headlines as we await government legislation to be tabled in response to the 2015 Supreme Court of Canada decision legalizing physician-assisted dying. Palliative care gets less attention, but it is what most of us will want at the end of life: drugs to relieve agitation, pain, agonal breathing and other symptoms. Nurses can provide soothing medications, but only after doctors have issued prescriptions, often with increasing dosages. But as the Crosbie family discovered, doctors are few and far between in long-term care facilities, especially on weekends. Their experience is a cautionary tale.”

A #Daughter Pays Homage to Her #Parents With an Intimate Look at #Love and #Loss. @nancyborowick #hpm

"One can only truly understand and appreciate life when faced with one’s own mortality. Nobody wants to talk about death, but it is one of the only things that is certain in life, so an awareness of this finitude allowed my family to take advantage of the time we had left together. “Cancer Family, Ongoing” is the story of family, looking at the experiences of two parents who were in parallel treatment for stage four cancer, side by side. The project looks at love and life in the face of death. It honors my parents’ memory by focusing on their strength and love, both individually and together, and shares the story of their final chapters, which came to a close just 364 days apart from one another."

Are #Families Ready For The #Death And #Dying #Conversation? #ACP #InformedChoice

"The Institute of Medicine (IOM) believes the time is right for a national dialogue to normalize the emotions on death and dying. They think that the social trends point toward a growing willingness to share stories about the end-of-life care and that it will help drive more family discussions. In the IOM consensus report, Dying in America, experts found that accessibility of medical and social services could improve a patient’s life at the end. But if people don’t discuss which medical care or social services they want or not, how will their wishes be known and carried out?"

The Meaning of #Life: #Palliative #Care Makes Every Moment Count. #hpm

"For someone facing a serious, chronic illness, the answers to that question take on a sharp focus. A patient with heart disease might want enough energy to walk around the neighborhood. A cancer survivor may want to feel like herself again after rounds of chemotherapy. Others might have a goal of seeing their children get married—or perhaps to get married themselves.

Helping patients get the most out of life is the aim of palliative care—which could surprise some people who associate the specialty with hospice, or care delivered in the final days and hours. Palliative care services do indeed benefit people nearing the end of their journey, but the field has become much broader over time. Many patients with a life-threatening disease now start receiving palliative care early—sometimes soon after diagnosis..."

On #Widower Watch. #hpm @otherspoon

"Marking family and personal occasions in this way has become increasingly important to all of us; these events intersect long, quiet weeks with laughter and company. And here’s the often unacknowledged benefit to keeping watch on a widower: With my grandparents dead and my friends all around my age, he diversifies my social life as much as I do his. He gives me a perspective on the city we live in that my peers simply don’t have. We spend our time together talking about our dissimilar lives and the things that matter to us, reminiscing about his many rich years, and looking up old poems in the vast library that lines the walls of his house. He is my friend and I miss him when I am away. As it turns out, nonagenarians are good company".

It’s worth it: #Love in the face of #Death. @lexibehrndt

"It’s a painful thing losing someone you love. It wrecks you at your very core. It shatters you, as they take a piece of your heart with them as they go. It is earth-shaking and dream-crushing and horrible in every way imaginable.

And it is worth every single second— every beat of their heart, every whispered prayer, every ounce of love given, every time you held their hand, every tear shed, every smile, every kiss, every lullaby and every single time they looked at you with soulful eyes, and told you in their own way, 'I love you, too.' They are worth it all.

Take it from me.

Choose the harder path. Love until you feel like your heart has given all it has, and then give a little more."

How to Tell Someone You’re #Terminally #Ill. #hpm

"Though everyone eventually dies, few know how to talk about the end of life. ‘‘People don’t know what to say,’’ Wanda says. ‘‘They’re afraid.’’ Be prepared for strange and stilted reactions. Some want to believe in a fix and will give you unsolicited health tips. (‘‘Don’t eat sugar.’’ ‘‘Avoid gluten.’’) You can ignore their suggestions but acknowledge the heart underlying them. People may offer to pray for you. ‘‘Prayers are good, but maybe what I need is someone to listen,’’ Wanda says. For that type of engaged listening, you may need to seek out a professional, like a trained social worker or a psychiatrist. Sometimes people who know about your condition — those you tell will tell others — will pretend your situation does not exist. Or weirder still, they will temporarily forget". 

Drawing portraits of #dying people in #hospice taught this artist about #living. #hpm @claudiabicen

"Sitting in the museum’s atrium the day before the show opened, Biçen, 29, said she embarked on the project believing the dying might have lessons to teach her.

'Birth and death – these two moments of life are really sacred, and everything in between is kind of the madness of life,' she said. 'I thought that lying there on your deathbed you’re going to be confronting your life. What did it feel like to be dying? I think most people haven’t had a conversation with someone who is dying. It’s just pushed out of social consciousness and I think that’s problematic'."

How ‘Before I #Die’ Walls Boost #Palliative #Care. #hpm @candychang

" 'In order to die well, we need to learn how to talk about it,' Chang said, speaking to members of AAHPMN and HPNA.

Palliative care offers those with serious illnesses—both short and long term—more options with a focus on improving the quality of life. Public support for palliative care and end-of-life planning with medical professionals has swelled in recent years, but talking about death and care for those with serious illness is still complicated and difficult.

What Chang accomplished in her project was open up the conversations that are difficult to have—both with doctors and family members—whether under the circumstances of a serious illness or not. The chalkboards provided an anonymous outlet to share ideas, memories, anxieties and aspirations that are emotional and complicated."

Just Days Before Her #Father #Died, She Told Him What He Meant To Her. @NPR @StoryCorps

When he returned from the hospital to find hospice nurses awaiting him at his home, Eva says, he turned to her and said, "I think they think I'm gonna die."

And while he continued to get weaker as he approached the end of his life, Eva says she and her father had not spoken in depth about the prospect of his dying — until the conversation she recorded for StoryCorps.

"Do you think you're dying?" she asked him.

"Everybody dies," he replied.

"Are you afraid?"

"No."

"I wish it wasn't happening right now," she told him. "What are you most proud of, Daddy?"

"My kids."

"Your kids?"

"My family."

She did the interview with her father on a Tuesday afternoon. He died on Thursday night, that same week — on Jan. 29.

National #Family #Caregiver Day.

"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. #Caregiver #Support #hpm

"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".