Family-Centered Care

Function in the Midst of Dysfunction: Supporting Families Facing Serious Illness

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#BustingTheMyths about Hospice Palliative Care

It’s Hospice Palliative Care Week in Canada. 

The campaign (May 5th – 11th) this year focuses on #BustingTheMyths about Hospice Palliative Care

This year, the Canadian Hospice Palliative Care Association (CHPCA) designed a “Busting the Myths” campaign as a response to the need to educate Canadians including caregivers, physicians and all healthcare providers, citizens and political leaders around common myths about hospice palliative care.

The #BustingTheMyths campaign aims to empower Canadians through education by identifying and clarifying misperceptions about Hospice Palliative Care in Canada.

Working together to educate one another is a vital step in the pursuit of excellent Hospice PalliativeCare.

Source: CHPCA Canadian Hospice Palliative Care Association

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Cancer Mythbusters: Is Palliative Care Only for End-of-Life Patients?

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"Palliative Care is an often misunderstood specialty, focused on providing support and pain management strategies to cancer patients throughout all stages of their illness. This approach, which can be blended into curative cancer therapy, focuses on care for the whole person: mind, body, and spirit."

Source: Cancer Mythbusters - Is Palliative Care Only for End-of-Life Patients?

Hospice Palliative Care is about Living Well. Right to the End. 

It's National Hospice Palliative Care Week and it is so important to demystify and destigmatize the incredible breadth and scope of Hospice Palliative Care. 

Hospice Palliative Care is about Living Well. Right to the End. 

Hospice Palliative Care is aimed at relieving suffering and improving the quality of life for persons who are living with, or dying from, advanced illness or are bereaved. 

The goal of Palliative Care is to provide comfort and dignity for the person living with the illness, as well as the best quality of life for both this person and his or her family*.

Palliative Care services are helpful not only when a person is approaching death but also during the earlier stages of an illness. Palliative care may be combined with other treatments aimed at reducing or curing the illness.

*”family" is whoever the person says his or her family is.

For more information and resources regarding Hospice Palliative Care, please visit the Canadian Hospice Palliative Care Association

Who Will Care for the Caregivers?

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"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".

An Innovative Approach to Family-Centred Legacy Projects

I am a Palliative Social Worker and for the past 17 years have had the privilege of caring for people facing a life-limiting illness.  It is an intimate and profound experience - sitting alongside people as they face end-of-life.  They share their hopes and fears - about living and dying - and about caring for and leaving behind those they love.  Trying to protect their families while also wanting to prepare them.  Grieving these losses begins at time of diagnosis.

I recognize the importance of creating safe spaces and making time to have these essential conversations.  A specific legacy project creates opportunities for the individual and family* to do just that - to hold on, while letting go.  We meet together to explore the impact of the illness, to talk about goals and plans, to acknowledge their grief and honour connections.  This project can be completed with families large or small, and include children of all ages.  That Project? While the results have been profound, the activity is, quite simply, creating a “Hug”. 

The physical embrace of a Hug is comforting for anyone in a time of need.  In this instance, it is a creative legacy project that can be completed by anyone, anywhere at any time and is then exchanged as a lasting memento.  The Hug can be taken to any significant place or event: to school, a little-league playoff game, during an admission to hospital or hospice, or even once someone has died, these hugs can be buried or cremated and remain with a loved one forever.

Although tantamount to making a scarf, it is more importantly symbolic of the outstretched arms of a loved one, it becomes a personalized “Hug”.  The components are basic… a flat sheet, markers or fabric paint, scissors and willing participants.  After laying a sheet on the ground, one person lays on top of the sheet while another traces around their outstretched arms and hands.  After sitting up, lines are drawn connecting each arm and then taking scissors, cut along the outline.  Each Hug is then adorned with messages and images of the shared connection and becomes a tangible expression of their love. 

I have completed this activity with anyone wanting to participate, whether ambulatory or bed-bound.  For those who are bed-bound, after carefully sliding a sheet behind their shoulders, the family tenderly helps to hold and trace their outstretched arms and hands.  Throughout this activity, the individual and family share stories and a profound connection, with each gentle movement and precious memory cultivating an incredibly intimate experience.

Language, distance or time do not serve as barriers.  I have completed this activity when families speak a language different from my own.  Despite communicating through an Interpreter, the conversation remains seamless throughout as the family creates a beautiful and moving tribute while supporting each other in their shared love and grief.  This supportive intervention has also bridged great distances, even though families were thousands of miles apart, they completed and sent their personalized hugs via courier to be at the bedside of their dying loved one.  I have also completed this project with children following the death of a parent (many of whom had not been informed about the disease or prognosis in advance).  Although a parent - or any loved one might die before the family has an opportunity to have these conversations, it is so important to facilitate therapeutic activities to collectively express their grief while honouring the connection with their loved one.  

While this “Hug” is essentially an expressive arts project, it creates and holds significant therapeutic value for all involved.  It is a collaborative experience for the family to honour connections while preserving a legacy.  Though each experience is unique, what remains universal are the shared laughs, tears and a multitude of stories - whether with a partner, children, grandchildren, siblings, parents, cousins, friends (or all of the above), they create reminders of shared experiences, connections and precious memories. 

I believe as Health Care Professionals, we can provide invaluable opportunities for families to connect, and collectively process experiences from time of diagnosis through to end-of-life and into bereavement.  I feel extraordinarily privileged that families allow me into their lives - however brief, I hold that time as sacred and do all I can to foster these connections while honouring the legacy of those living and dying.

(family* is defined by the individual - be it partner, children, parents, siblings, neighbour, friend, etc.)

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..."

Embracing Life While In Palliative Care

"When you come to the end of your life, how do you mark it's last moments?

This short documentary,Embracing Life, aims to take away the stigma attached to death and dying.

Talking to patients in palliative care, the creators of the film enable conversations about how people feel about approaching the end of their life.

'The aim of the project has been to help build the capacity of communities to talk about death and dying, loss and grief, so that those living with a terminal disease can be better supported,' Sam Kelly from Calvary Health Care Bethlehem told The Huffington Post Australia.

The patients interviewed in this film give an incredibly positive perspective on what it's like to face death.

'Once I accepted that death was to come, I've just held everyday and I try to live it to the fullest,' said Tony Steele.

What Luck Means Now

"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'."

When Cancer Treatment Offers Hope More Than Cure

"I turned back to my patient, still holding her hand. 'How about we take a little break from the treatment?'

She nodded, and we sat in silence again. After a while, she asked 'When we gonna get started on chemo again?'

I looked uncertainly at her and then at Mr. Boo. He looked back at me, awaiting my reply. This time, I rearranged myself to sit up a little straighter in my chair.

'Well, I have to wonder if giving you more chemotherapy is the right thing to do, with all that you’ve been through. I’m wondering if we should be talking about bringing more care into your home, to assist both you and Mr. Boo. Maybe even hospice.'

I had said the word."

Repeat After Me: 'Hospice Means More Care, Not Less.'

"If you or anyone you know has advanced illness that isn't meaningfully getting better (or keeps getting worse) in spite of many treatments and hospital stays and doctors' visits then you owe it to yourself to learn more about hospice sooner rather than later. This is especially true for more frail elders with serious illness because the hazards of additional hospitalizations and certain treatment side effects are more serious and more common. Ideally, hospice care is set up on a better day, in advance of a true crisis so that the hospice team and person receiving services can get to know one another and set up truly personalized care. Too many people elect hospice so late in their course of illness that they miss out on many of the benefits".

I'm Trying to Die Here. ~ Rev. Dr. Carla Cheatham

"Our goal is to maximize quality of life for whatever quantity naturally remains for everyone involved. Knowing that we are the interlopers, we strive to adapt to the personality and culture of the person receiving hospice as well as that of their entire family. We pay attention. We listen to stories. We pick up queues and share them with our team members so we can all work to provide as little intrusion as possible as guests in the home (whether “home” is one’s own or a room in a facility)".

Helping #Children #Cope with #ALS

"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". 

#Family Speaking out in Support of Palliative Care. #HPM

Click on the photo above to watch the story of one Family sharing their experience following a diagnosis of advanced cancer and their subsequent experience with Palliative Care.

Hospice care: 'This is what dying should look like'. #HPM

"The goal of the hospice and palliative care is to minimize the suffering of the patients and their families and to make the best of their last days".

"You don't get over bereavement, you get on with it": Mumsnet.

"Have the boys 'got over the worst of it'? Who knows? We take every day as it comes. We are on a journey that takes us on a bumpy and unpredictable ride, with little in the way of helpful signage. Just because we have faced a huge trauma, does not mean that we are exempt from facing further difficulties en route".

Moody Cow Meditates: A playful way to introduce children to the power of meditation.

"It all started one stupid, rotten day when everything went wrong…

Peter the cow is having a BAD day. After missing the bus and wiping out on his bike he loses his temper and gets in trouble. To make matters worse all the other kids are teasing him, calling him Moody Cow. Peter’s day just seems to get worse until his grandfather comes over and teaches him how to settle his mind and let go of his frustration through a simple and fun exercise. This vibrant and funny children’s book is a playful way to introduce children to the power of meditation. With full color illustrations by the author, Moody Cow Meditates is a wonderful book for parents and children to share together.

Look for the Moody Cow Mind Jar App for iPhone and iPad, available in the App Store and iTunes!" 

 

This App Will Help You Sort Through Your Views On Dying.

"There are apps for nearly everything -- ordering food, catching rides and finding dates, to name just a few of the common tasks people accomplish via a swipe of a screen. Now, a Boston-based company wants to make thinking about and planning for death just as simple.

Cake, as in “a piece of cake,” is a website and soon-to-launch app that asks people a series of yes-or-no questions about the end of their lives in order to help them think about certain issues, plans and needs. The topics include funeral preferences and financial planning, as well as whether there are places people want to see before dying and how satisfied they would be with their relationships if they died tomorrow.

'One of the biggest problems right now is that even if you want to have these conversations, most of us have no idea where to start. It's daunting and overwhelming,' Chen said.

'Even though we know ourselves, we may not truly understand our own values around end of life because most of us haven't spent much time thinking about it. We developed the app as a way to ease people into thinking about the end of life'.

The app is targeted toward users who want to talk about dying to their loved ones, as well as those who want to share their end-of life-wishes with their doctors and caretakers.

'We interviewed dozens of health care professionals and routinely heard doctors say that bringing up advance care planning ‘is the hardest part of my job.’ Even doctors who are trained in how to have these conversations find it challenging to bring up,' Chen said. 'Additionally, there's often not a lot of time at the doctor's office. It makes sense to provide a synchronous tools that empower people to think about things on their own and with their families while they're in the waiting room, or at home'.”

The Paternalism Preference — Choosing Unshared Decision Making.

"Consent is not merely the granting of permission but an exercise in choosing, and choice requires disclosure of a certain amount of information. How much information is adequate? Rather tautologically, as much as necessary to decide: 'The scope of the physician's communications to the patient must be measured by the patient's need, and that need is whatever information is material to the decision'.”