More Moments in Time: a Free Ebook!

Several years ago I found a book titled, More Moments in Time: Images of Exemplary Nursing. The book is by Beth Perry, a nurse from Alberta.

The book is based on a study of the beliefs, actions, and interactions of a group of extraordinary palliative care nurses. Full of stories, poetry and wisdom, this book inspires while teaching practical skills.

It is available right now, for free as a downloadable e-book (go to http://www.aupress.ca/index.php/books/120158  and choose the tab Free PDF).

Beth’s goal is to build caregivers’ skills and to remind us all of the rewards of caring for others.

Thanks Beth, good work!

Kath

Pediatric Hospice Palliative Care in Canada

What is Pediatric Palliative Care

“While the number of children requiring palliative care is small relative to adults, the impact of a child’s serious illness and death is extensive. It affects the family as well as the entire community. Moreover, the illnesses that affect children are quite distinct. Palliative care for children must comprehensively address the body, mind and spirit, and requires an inter-disciplinary approach; it is also inclusive of parents and siblings.”

[For more information, see PedPalASCNET, A Network for Accessible, Sustainable, and Collaborative Research in Pediatric Palliative Care].

In their Pediatric Hospice Palliative Care | Guiding Principles and Norms of Practice, the Canadian Hospice Palliative Care Association defines pediatric hospice palliative care as

“…an active, holistic approach to care which focuses on relieving the physical, social, psychological and spiritual suffering experienced by children and families  who face a progressive, life-threatening condition, and helping them fulfill their physical, psychological, social and spiritual goals. Its philosophy is to provide optimal comfort and quality of life, and sustain hope and family connection despite the likelihood of death. Pediatric hospice palliative care aims to provide comprehensive care for children and their families through the living, dying and grieving processes. It affirms life and regards dying as a process that is a profoundly personal experience for the child and family. Pediatric hospice palliative care is based on the same principles as adult hospice palliative care but also recognizes the unique needs of families faced with a child’s illness and death.”

The Role of the Pediatric Palliative Care Team

When a child or adolescent receives palliative care, the family is the unit of care. Delivering age-appropriate care is vital. When a child or adolescent has a life-threatening illness, the tendency may be to treat him or her as developmentally younger than their chronological age. This could cause the child to suffer emotionally and/or socially. Including the child in developmentally appropriate discussions about the illness, and including the family unit, creates an open dialogue and trust between the palliative care team, the family and the child. Open communication is important, especially as the disease advances.  Providing information allows the family, and the child, to make informed decisions. Health Care providers benefit from training in discussions of death.

One of the concepts identified by families as an outstanding practice in palliative and end-of-life care is getting to know each child personally – their likes and dislikes, and what makes them an individual. This way, interventions can be tailored to their needs. Individualized care acknowledges both the child and the family unit’s beliefs and cultural practices, and respecting diversity.

The pediatric palliative care team provides comfort and support to reduce or alleviate suffering. Physical and psychosocial symptom management is required.  The Canadian Psychological Association’s “Psychology Works” Fact Sheet: Pediatric Palliative Care speaks to “Interdisciplinary palliative care, including effective communication, psychological support, spiritual care, comprehensive pain and symptom control, and grief and bereavement support are appropriate from the time of diagnosis. Palliative care goals and life-prolonging goals can be pursued simultaneously. “

The pediatric palliative care team generally consists of many team members – physicians, nurses, personal support workers, clinical psychologists, social workers, dieticians, physical therapists, pharmacologists, spiritual leaders and respite caregivers. Interdisciplinary care across settings can be extremely beneficial to the child and the family unit.

Shared decision making (again, developmentally appropriate) allows the child and the family to actively participate in their treatment and decisions in regards to their care.

Worth a watch: Little Stars is tells the surprisingly life-affirming stories of young people around the world living with life-limiting illnesses.  Against the odds, these children and young adults are making the most of every moment thanks to the support of their loved ones, working in harmony with passionate ‘pain and palliative care’ teams.

Education and Resources

Children and Youth

 

20th International Conference on Palliative Care

On September 9, 2014 I was lucky enough to be able to attend the 20th International Congress on Palliative Care in Montreal, QC. There were so many fabulous speakers and I wanted to share some of the take-a-ways from the Congress with you.

Dr Balfour Mount and Kath Murray

Dr Balfour Mount and I at the Congress

Dr. Tom Hutchinson led the one day pre conference workshop titled “Whole Person Care for Persons with Cognitive Impairment”. One of the first speakers suggested “We are all cognitively impaired. Live with it – deal with it.” When we accept the cognitive impairment is part of life then we can plan for it, prepare for it, and put strategies in place. Preparing will get us further ahead than fighting it.

Dr. Howard Chertkow presented “The Facts:  Some Key Neurologic Data about Cognitive Impairment” and spoke of the quick screening test called the Montreal Cognitive Assessment that he and his colleagues developed. This got me wondering about whether a screening test like this would be valuable for individuals to use through their senior years. This test obviously has applications in clinical settings, but might it also have a place in family settings? I believe that early detection has benefits in all settings. I wonder if I will start taking the test annually.

John and Susan McFadden addressed Persons with Cognitive Impairment and the Role of the Community. John used a quote from historian Jesse F. Ballenger’s book Self, Senility, and Alzheimer’s Disease in Modern America: A History, “senility haunts the landscape of the self-made man”, explaining that if we are so big on what we think we’ve accomplished then it’s even more devastating for us to lose our cognitive functioning. John also said, “We are created to be in relationship with each other, laughter, pleasure, joy and love, and dementia does not change that ability”. Susan spoke separately on the role of the community and stressed that “a third of deaths of people over 65 will die of, or from, or with dementia”. She also cited a recent study in which it was found that in the last 3 months before death, 40.7% of people with dementia underwent at least one burdensome medical investigation. When family understand the poor prognosis, they are less likely to agree to burdensome medical investigations, hence the importance of sharing information with family to lessen undue suffering. She spoke about dying as a social phenomenon which needs to be looked at socially, from a community perspective, and with a focus on a dementia friendly communities.

** Side note: I love the work that the Carpe Diem Village in Quebec is doing with, and for, people with dementia. Susan talked about the idea of putting together our own toolbox for caregivers who may care for US one day, including in it things that bring us joy and calm us (smell of lavender, songs we love, etc). This resonated with me as chapter 4 in the new text, Integrating a Palliative Approach: Essentials for Personal Support Workers, introduces the Basket of Comfort – an image I use for the collection of nonpharmacological items caregivers can use to help decrease a dying person’s discomfort and provide support.

 Dr. Cory Ingram was up next with Roles and Responsibilities. He said that “for those people who don’t want to be a burden, get over it”. On one hand that acknowledges that most of us will be in need of care at some point in our lives but for some, ‘getting over it’ is easier said than done. There was mention of a book called, Advance Care Planning: Communicating About Matters of Life and Death which I’m interested in reading. He showed some interesting slides on William Utermohlen, a U.K. based artist who was diagnosed with Alzheimer’s disease in 1995. As William declined into Alzheimers he did a series of portraits, over a 5 year period, documenting the decay of his mind due to the disease. His self portraits are incredible, moving, thought provoking.

William Utermohlen portrait

The themes common to family caregivers were discussed – lack of knowledge; about person, disease and caregiving; nobody understanding; families not acknowledging that the person is dying; the guilt and frustration, all of which reinforce the need for literature for families and caregivers.

It was mentioned that what might slow progression of dementia is to walk to a Greek restaurant with a friend – in other words, getting exercise, healthy diet and socialization.

A Public Health Approach to Palliative Care with Denise Marshall, Mary Lou Kelley and Allan Kelleher was excellent. The new terminology of Health Promoting Palliative Care (HPPC) and Compassionate Communities (CC) was discussed. In regards to public health, the idea is that if there is a social issue that is important, we need a public health approach (like smoking, AIDS, vaccinations, etc). The questions that came up were – how can we as a community help people address dying, caregiving, depression? How do we understand that people that are dying are not a failure of the medical system, that healthy communities and end of life care are everyone’s responsibility? How do we help normalize death education and empower volunteers and informal caregivers and how do we move from the bedside to the bigger community to teach about caregiving? Examples of what’s happening internationally were discussed by Denise Marshall – death education in the elementary and high schools, beer coasters in the pubs (“Dying for a beer….” on the back of the coaster, “10 ways to support a bereaved friend”. Canadian examples include the growing Death Café’s such as this one in Calgary, AB with Wendy Kurchak, and The Bucket List Festival which happens in Vancouver and Victoria annually.

Mary Lou Kelley talked about long term care and that 90% of palliative care is provided by PSW’s .“Death is part of our job” she stressed. “Care is palliative. People are not palliative”. She discussed preparing people and avoiding crisis. Dr. Margaret Cottle, Palliative Care physician in Vancouver, BC, working in the Home Hospice Program, and teaching at the University of BC medical school, talked about front line caregivers as the foundation of the care and that we need to get this information into the colleges. I was honoured to have  Jose Pereira and Mary Lou Kelley  both mention and recommend our new resources during the discussion, specifically addressing Margaret’s remarks.

All in all it was an amazing experience to be surrounded by so many that are as passionate about palliative care as I am.

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