End of Life Care

What people talk about before they die

“I visit people who are dying -- in their homes, in hospitals, in nursing homes. And if you were to ask me the same question -- What do people who are sick and dying talk about with the chaplain? -- I, without hesitation or uncertainty, would give you the same answer. Mostly, they talk about their families: about their mothers and fathers, their sons and daughters.

They talk about the love they felt, and the love they gave. Often they talk about love they did not receive, or the love they did not know how to offer, the love they withheld, or maybe never felt for the ones they should have loved unconditionally.”

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.)

‘Extremis’ Trailer: Netflix Documentary Examines Realities of End-of-Life Care

"The realities of death are not easy to confront. That much is clear in the trailer Netflix just released for “Extremis,” an original documentary short exploring the harrowing decisions families must make for their loved ones in urgent end-of-life cases relying on machine-based life support.

'We’re all gonna die…and it’s good to have a little bit of a say in how,' says Dr. Jessica Nutik Zitter, the palliative care physician featured in “Extremis,” as we see images of families, doctors and patients in the midst of facing death daily.

The trailer depicts the access granted to Oscar- and Emmy-winning filmmaker Dan Krauss (“The Kill Team”) into the ICU unit of an Oakland, California public hospital. Krauss attempts to intimately examine “the intersection of science, faith and humanity” by observing personal, real-time accounts of how complicated and emotionally wrought the dying process becomes when there are opportunities for choice in death.

The 24-minute film premiered at Tribeca Film Festival in April and the San Francisco International Film Festival on Saturday. “Extremis” is set to release globally on Netflix on September 13."

Source: IndieWire. September 6, 2016

"Extremis" Trailer

Hacking the #Hospital #Death. When you Can't #Die at #Home. @TheLizArmy #ACP

“Spoiler alert: we are all going to die

One thing I have noticed as an “empowered patient” is that most people don’t talk about death and dying. We might think about it, but we don’t plan in advance or communicate what we would want if we ever were put in a position where we could not speak for ourselves. I understand. It is an uncomfortable topic.

According to a 2012 report by the California Health Care Foundation, 82% of Californian’s think it is important to put your end of life wishes in writing, yet only 23% have done so. Why is this important?

For one thing, doctors are trained to save people, and without a medical order or an advance directive, a medical team will, by default, try to save your life by all methods possible…

As a relatively healthy 36-year-old, saving my life by all methods possible actually sounds like a good idea! But if I was dying, say from an advanced brain cancer, there is no amount of CPR in the world that is going to cure me of cancer… 

The beginning of the end

…The medical team gave J medication to take away any pain he may experience. They removed his breathing tube, and unhooked all machines except for the one monitoring his heart beat. Quickly, his bed was moved to the sunny room where his friends, including myself, were waiting outside by the window.

As soon as the medical team cleared out we poured in. One person set up the speakers. Another friend was ready with the iPod. The door to the medical area was closed. The rest of us swarmed in around him: hands placed on his hands, his legs, his feet. The room was small, so some hovered around the perimeter and in the doorway to the open air…

We fell silent and the first song began…

A friend said “Orange Sky” held a lot of meaning for J. I had never heard this song, but now I will never forget it. I watched J’s heart rate decrease during the first two-thirds of the song, from the low 30s to zero. The monitor began to ding. A friend pushed a button, silencing the sounds. I held J’s feet.

We listened through the end of the song, with our faces on J’s, tears pouring out of our eyes. I was sobbing. We were devastated.

No one danced.

When the song ended there was silence.

Then the scene from a movie played out: A doctor wearing a white coat walked into the room. He donned a stethoscope and raised the end to J’s chest. His hand moved to various areas of our friend’s chest, and down and around to his stomach. He raised each of J’s eyelids to shine a flashlight into the pupils looking to see if they would constrict. The pupils did not move. The doctor looked at the clock and said, “It is 6:11. Take as long as you need.” He exited the room. End scene.

We all stood looking at J for a long time. Then the music began again… ‘We Could Be Heroes,’ by David Bowie.

The end

The best way to capture your healthcare preferences is by having a conversation with your loved ones, appointing a medical decision maker, and then documenting your preferences in an advance healthcare directive.”

#Prepare for a good End of Life. #ACP #InformedChoice #EOL. Judy MacDonald Johnston

“Thinking about death is frightening, but planning ahead is practical and leaves more room for peace of mind in our final days. In a solemn, thoughtful talk, Judy MacDonald Johnston shares 5 practices for planning for a good end of life.”

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.”

#Dying, With Nothing to Say. #hpm

"Months later, I began writing a book about writers’ final days. Talking to my subjects’ families and friends, I realized that while nearly everyone has a fantasy of a “last conversation” with someone they love, very few people actually have it. It is the fantasy of resolving all conflicts, of emotional catharsis, that rarely ever comes to pass, because the habits of reticence or resentment that were there the whole time are still there, because the proximity of death does not transform personalities, or compel us to cut through to the heart of things, however much we want it to…

Part of the problem is that some silences are too wide to narrate. Words, even if the right ones miraculously presented themselves, would not be enough. The confession and forgiveness we want to fill the room do not spring up more naturally in extremis, under duress. It may be the last chance for the dying person to clarify, but clarity doesn’t necessarily come. In this way, death is a lot like life".

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)".

A New Vision for Dreams of the #Dying. #eolc #hpm

"Dr. William Breitbart, chairman of the psychiatry department at Memorial Sloan Kettering Cancer Center, who has written about delirium and palliative care, said that a team’s response must also consider bedside caregivers: “These dreams or visions can be interpreted by family members as comforting, linking them to the legacy of their ancestry.

But if people don’t believe that, they can be distressed. ‘My mother is hallucinating and seeing dead people. Do something about it!’ Dr. Breitbart trains staff to respect the families’ beliefs and help them understand the complexities of delirium.

Some dream episodes occur during what is known as 'mixed-state sleep' — when the boundaries between wakefulness and sleep become fragmented, said Dr. Carlos H. Schenck, a psychiatrist and sleep expert at the University of Minnesota Medical School. Jessica Stone, the teenager with Ewing’s sarcoma, spoke movingly about a dream of her dead dog, Shadow. When she awoke, she said, she saw his long, dark shape alongside her bed.

Dr. Banas, the neurologist, favors the phrase end-of-life experiences. 'I try to normalize it for the family, because how they perceive it can push them away from that bedside or bring them closer,' she said."

"I See Dead People". #Dreams and #Visions of the #Dying.

"Dr. Christopher W. Kerr is the Chief Medical Officer at The Center for Hospice and Palliative Care, where he has worked since 1999. His background in research has evolved from bench science towards the human experience of illness as witnessed from the bedside, specifically patients’ dreams and visions at the end of life. Although medically ignored, these near universal experiences often provide comfort and meaning as well as insight into the life led and the death anticipated".

Making a living will is a good idea. Telling people about it is even better. #HPM #ACP

"The problem, of course, is that patients are reluctant to thoroughly advocate for their end-of-life preferences — and to do so with their loved ones’ involvement".

Getting end-of-life care right for people with #Dementia. #EOLC #HPM

"Dementia isn't always thought of or recognised as a terminal illness. As a result, many people with dementia do not get the palliative care they need as they approach the end of their lives. Those that do receive it later than they should. This is not good enough".

Patients aren’t told that death is near until too late. We can do better.

"Oncologists, cardiologists, and other specialists can often predict a patient’s rate of decline based on a specific disease, Obermeyer said. But patients, particularly those who are elderly, often suffer from more than one serious illness that make it more difficult to predict when they’re near death. So a pulmonologist might treat someone’s pneumonia, for instance, without recognizing it signals a broader decline".

Dignity, Respect and Choice: Advance Care Planning for End of Life for People with Mental Illness.

"Dignity, Respect and Choice: Advance Care Planning for End of Life for People with Mental Illness is a two part resource that will help support people with mental illness, their families and carers, and health professionals with the complex issues which might arise around Advance Care Planning for End of Life".

Toward Evidence-Based End of Life Care. ~NEJM

"The disquieting patterns of end-of-life care in the United States have been well documented. In the last month of life, one in two Medicare beneficiaries visits an emergency department, one in three is admitted to an intensive care unit, and one in five has inpatient surgery. But one of the most sobering facts is that no current policy or practice designed to improve care for millions of dying Americans is backed by a fraction of the evidence that the Food and Drug Administration would require to approve even a relatively innocuous drug".

Finding the Words: How to talk with children and teens about death.

"It's hard to talk to children and teens about death and dying, particularly when someone they love has died or might die soon. Our instinct as caring adults may be to shelter them from painful truths. Yet as Dr. Wolfelt emphasizes, what kids need most is our honesty and our loving presence.

This practical and compassionate handbook includes dozens of suggested phrases to use with preschoolers, school-agers, and teenagers as you explain death in general or the death of a parent, a sibling, a grandparent, or a pet. Other chapters include possible words and ideas to draw on when you are talking to kids about a death by suicide, homicide, or terminal illness. At times grown-ups must also have very difficult conversations with dying children; this book offers guidance. A final chapter discusses how to talk with kids about funerals, burial, and cremation".

Inpatient Hospice Palliative Care Directory free via iOS and Android.

"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".

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'.”