The Chronicle

Division of Palliative Care Edition

This edition of The Chronicle focuses on palliative care and our Department’s involvement at the local, provincial and national level. Unlike previous editions of The Chronicle, this edition attempts to paint a broad picture of palliative care and then si tuate our Department within that picture. As always, we highlight some of the wonderful programs, individuals and

groups that are engaged in this important work. My thanks to all of the contributors and our dedicated clinicians and administrative staff that are providing palliative care, teaching palliative care and creating a provincial and national framework for the provision of palliative care.

Chair’s welcome Dr. David Price

In this Edition

What we need and what we hope for

What we are doing to make this possible

Palliative care education

Palliative care research

Working wherever our patients are

The faces and stories

Palliative care as public health

Our patients, families and friends

Our future

Contributors

Janice Barnett Hugh Boyd Anne Boyle Amie Davis Naheed Dosani Dale Guenter Michelle Howard Jennifer Kagan Brian Kerley Jenny Legassie Chris Lund Denise Marshall Alicia Merry Carol Nagey Cait O’Donnell Stephen Singh Marissa Slaven Alan Taniguchi Kelly Vlaar Denise Wilson Anne Woods John You

To be known.

To be safe.

To be cared for.

To be with those we care for and for those

we love to be cared for.

Some of us wish not to die – at any time,

at any cost.

Most of us want to be able to trust our doctors and wish not to be kept alive when we no longer have hope of a meaningful

recovery.

To ask questions.

To be listened to and to have our needs recognized by someone who has the

imagination to hear us.

To express our particularity.

Not to be judged.

Not to be abandoned.

To be able to name the limits to our own

suffering.

To continue to love.

What we need and what we hope for When we are ill, when illness progresses and when our lives are coming towards the end, what do we need and hope for?

The College of Family Physicians of Canada says that “as a matter of social justice, all Canadians – regardless of age, disease, stage of disease, and geographical location – should have access to palliative care that meets national standards. Palliative care must be available in all health care settings. In addition, a variety of settings must be available for end-of-life care.”

What we are doing to make this possible

Palliative Care: What it stands for The World Health Organization Definition Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.

Palliative care affirms life and regards dying as a normal process and intends neither to hasten nor postpone death. It is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications.

“Palliative Care for all” needs to be provided through a system that comes “from the people, for the people, by the people” integrated “into all levels of society – from the community level upward and from the palliative care expert in the health system downward”. It is “impossible to develop a palliative care system that is separate from the existing health care system and social support network – there is simply not the capacity to do this”. (Stjernsward J, Foley K, Ferris F. The Public Health Strategy for Palliative Care. J Pain and Symptom Manage, 2007)

Palliative care offers a support system to help patients live as actively as possible until death, and to help families cope during the patient’s illness and in their own bereavement.

Building a better system in Canada After almost 40 years, palliative care is being discussed. This is timely and essential.

Canadians are aware that our society is aging. More people are living and dying with complex illnesses. In our region alone approximately 14,000 people die annually. People are speaking more openly about their illnesses, their needs and their expectations for end-of-life care. There is increasingly a body of knowledge about how we should care for people at end-of-life. There are clear approaches and standards. Researchers, educators and clinicians are asking about the competencies needed to provide good palliative care, how to achieve these competencies and how to evaluate them.

Professional associations, governing bodies and research institutes are setting standards and assuming accountability for quality end-of-life care. Courts, in their willingness to hear cases and in their responses to those cases, have also articulated new standards.

Questions are being asked at many levels. Questions about who gets to choose what care, when and under what circumstances; about how we will care for the frail and elderly; about the cost of health care – and whether we are truly buying what we value.

Within each province, a number of stakeholder groups (organizations, health care providers and programs, educators and grassroots initiatives) have had a hand in developing palliative care. Wonderful components of care have been created. They are, however, piecemeal, not implemented early enough in a person’s illness, not universally accessible and not sustainable.

Our patients need integrated systems of care that truly serve them wherever they are. To do this requires a culture shift and truly making palliative care everybody’s business. It requires taking forward the best of the last 40 years and building better care for all.

Nationally The Way Forward

The Quality End-of-Life Care Coalition of Canada, representing 37 organizations across Canada, and the Canadian Hospice Palliative Care Association have undertaken a project to ensure that all Canadians have access to high-quality palliative care when and where they need it where the goal of care is to live well until death. It’s a vision where health care providers in the primary care or community setting, supported by specialist palliative care teams when needed, deliver care in a wide variety of settings from a patient's home or long-term care facilities, to hospitals in cities, rural communities and remote areas. Where palliative care is grounded in, responsive to, and owned by the community. Where palliative care service delivery supports and integrates with the primary interfaces of care.

Provincially The Declaration of Partnership and Commitment to Action: Advancing High Quality, High Value Palliative Care

Key priorities for palliative care in Ontario have been articulated with a focus on population health, quality and sustainability.

Regionally Hamilton Niagara Haldimand Brant (HNHB) Palliative Care

Regional Program and HOPE

All 14 Local Health Integration Networks (LHIN) are committed to designing and implementing regional programs for integrated palliative care services incorporating central hubs, early identification, primary care focus, provider education, planning and measurement tools, and policy that can drive change. Recently, the HNHB LHIN established the Regional Hospice Palliative Care Program Council, which acts in an advisory capacity to the LHIN and provides collaborative leadership to develop a comprehensive, integrated program designed around the experience of patients and families.

HOPE (HNHB Organization of Palliative / Services Enhancements) is a group of palliative care physicians committed to a justice-based system of palliative care and working to help coordinate service delivery, build clinical capacity, develop scholarship and create partnerships.

Education Palliative Care for all clinicians

Achieving optimal palliative and end-of-life care lies not only in designing a better system of care and discovering new knowledge, but also in enhancing the palliative care knowledge and skills of individuals who come in contact with death and dying.

As societal need for quality palliative care increases, there is growing imperative to ensure all physicians and health care professionals are skilled in palliative care. To this end, the Division of Palliative Care runs active educational programs for all levels of learners.

A robust curriculum in palliative care is being delivered in McMaster’s Undergraduate MD program. Informal surveys rank McMaster in the top tier of Canadian medical schools in terms of the amount and comprehensiveness of its curriculum. Palliative care education is integrated into all parts of the MD program (Medical Foundations, Professional Competencies, Family Medicine Clerkship) and is taught by an enthusiastic interprofessional faculty using innovative methods such as the Team Observed Structured Clinical Encounter (TOSCE) tool.

Education of undergraduate learners in other health care professions, such as nursing and rehabilitation sciences, is gradually being enhanced. The Division of Palliative Care runs an interprofessional learning series biannually for undergraduates, who obtain Program for Interprofessional Practice, Education and Research (PIPER) interprofessional education credits for participation.

Undergraduate Faculty of Health Sciences

In spring 2014, The Royal College of Physicians and Surgeons of Canada endorsed establishment of palliative medicine as a subspecialty. We anticipate that within the next one to two years, new postgraduate training programs in palliative care will exist in Pediatrics, Internal Medicine, Anaesthesiology and Neurology.

At McMaster, core educational opportunities currently exist for medical and radiation oncology residency programs. Most Royal College training programs now provide regular academic half days on palliative care. Residents in anaesthesia, general internal medicine, geriatric medicine, physical medicine and rehabilitation and psychiatry frequently complete electives in palliative care.

In 2014, the Department of Medicine sponsored a full day End-of-Life Care Retreat for its internal medicine residents. This retreat, with presenters from both internal medicine and palliative care, was well received by residents.

Educational opportunities are being developed to support the new geriatric psychiatry residency program and the anaesthesia chronic pain fellowship.

The Royal College of Physicians and Surgeons of Canada

McMaster offers an accredited one-year training program in palliative medicine for postgraduate medical learners from either family medicine or Royal College training streams.

Graduates of this program contribute to the human resource pool for consultant level physicians with specialized expertise in palliative care.

Postgraduate Conjoint Palliative Care Residency

The Division provides numerous educational offerings for practicing health care professionals.

Five Days in Palliative Care, Canada’s first interprofessional education course in palliative care, celebrated its 25th anniversary in 2014.

LEAP, a national comprehensive two day course in palliative care, has been taught by Division faculty to health care practitioners in McMaster University’s catchment more frequently than similar efforts anywhere else in the province.

Innovations in Palliative Care, a day-long continuing education event, addresses identified local knowledge gaps and leading-edge topics in palliative care.

Palliative Care Grand Rounds and Lunch & Learn facilitate regular opportunities for ongoing education of clinicians.

Continuing Professional Development Division of Palliative Care

The Department of Family Medicine residency program has developed an innovative, integrated curriculum for palliative care education consistent with The College of Family Physicians of Canada’s Tripe C initiative. This curriculum involves role modelling from the learners’ own family medicine supervisors, who demonstrate shared or collaborative care practices in their communities with local palliative care specialists.

This involves conceptualizing and implementing Entrustable Professional Activities (EPAs) in the training experience, facilitating competency-based education. The Department focuses on supporting both learner and supervisor, and linking training with continuous professional development.

Ultimately these efforts are envisioned to strengthen provision of primary palliative care and to increase system capacity to meet the growing needs of our communities.

Postgraduate Department of Family Medicine

Division Education Initiatives Contributing palliative care content to the

McMaster Textbook of Medicine currently under development as a joint project with the McMaster University Division of Internal Medicine and Jangiellonian University Medical College, Krakow, Poland

Designing palliative care apps for faculty and learners.

Division Research Asking Questions, Advancing Knowledge

The major research themes in palliative care are those facing the entire

field of health care:

How can health care be re-aligned to meet the needs of

society?

How can we apply our many health care options to complexity, frailty and dying in ways that honour the wishes of patients

and families?

How can we organize the health care system to ensure that every individual has access to high quality care when needed?

These themes are reflected in current research in the Division of Palliative Care in projects such as:

Improving advance care planning in general practice (iGAP) Quality palliative care in long term care Implementation and Evaluation of an Advanced Heart Failure

Collaborative (HeartFull) Model of Longitudinal Care

To foster research that is responsive to the needs of society, how can we create an incubator of palliative care scholarship as part of our clinical settings?

Take advantage of the breadth of clinical services involved with the Division to conduct research that crosses disciplinary and organizational boundaries.

Research like this, however, takes resources. It is important to engage with policy makers and other stakeholders in formulating research questions, and ask them to help us secure resources to conduct research across organizations that comprise our incubator.

Ensure that all of our clinical and education services have the ability to ask important and meaningful questions about their work, assess quality and plan for improvement.

Make sure that our stakeholders know about the innovations we create and seek their help to put our knowledge into practice.

Inter-Professional Care of Critically Ill Adults: From ICU to Community. This collaborative is developing an evidence-based, inter-professional, practical approach to minimize development of cognitive, psychological, physical and functional disabilities and to enhance recovery for people moving from ICU to the community.

Three Wishes Demonstration Project. This project elicited and honoured a set of wishes from patients, families, and clinicians in the hope of bringing peace to the final days of a critically ill patient’s life, and to ease the grieving process. For patients, eliciting and customizing the three wishes honoured them by individualized end-of-life care. For families, this project helped to commemorate the patient. For clinicians, the project offered a model of inter-professional care engendering respect for all, fostering reflective practice and promoting death with dignity in the ICU.

Research in the community. No one community model fits all. Research by Dr. Hsien Seow shows community-based specialist palliative care teams, despite variation in team size, composition, geographies, and despite ways of integrating with family physicians are effective at reducing the risk of being in hospital, of having an emergency department visit, or of dying in hospital.

The essential elements? A team design configured specific to regional needs, providing 24/7 access, educating and preparing patients and families on what to expect next, and managing complex symptoms proactively.

The iDECIDE study: Improving Decision-making about goals of care for hospitalized, elderly patients: a “multi-incubator unit” study Dr John You, PI. The overall objective of this research is to improve end-of-life communication and decision-making for seriously ill, hospitalized elderly patients, thereby improving the patients’ and families’ experience, improving the work experience for health care professionals, and avoiding unwanted aggressive medical care at end-of-life.

As part of this work, the project is assembling web and video-based decision support tools to prepare patients and families to make decisions about their care near end-of-life. These will be piloted and refined at three ‘incubator units’ across Canada (Ward of the 21st Century in Calgary, Hamilton General Hospital, and Montreal General Hospital).

ICU Where we work to save lives and save deaths.

Hospitals Where we integrate care and cure.

Longterm Care Where we ensure every person receives high quality care.

Hospice Where we work with tireless passion to provide care and compassion for the whole person.

Clinics Where we bring multiple types of interdisciplinary expertise together in one place.

Community Where we form partnerships to enable care.

Family Practice Where we are, or partner with, their family doctor and primary care team.

People’s homes or the streets Where we meet them in their own lived environment.

We work as family physicians, internists, intensivists, surgeons, nurses, social workers, occupational therapists, physiotherapists, researchers, teachers, administrators, chaplains, psychosocial bereavement counsellors, care coordinators, volunteers.

What we do varies. Our passion and commitment to patient care does not.

Because of the natural continuity that it provides. We know our patients. We know their loved ones and their children. We are often there at time of diagnosis. It makes sense to be there through their illness and at

the end of their lives.

We know and follow their families after they die. It helps us understand the context of their journey and

the context of the families we care for.

Why do we include palliative care in our practice as family physicians?

A 2010 survey reported that 42.4% of family and general

physicians visit patients in their homes.

Some walk, some bicycle, some drive.

We do house calls because we learn a lot more about the patient and context, get more traction with management plans, spin wheels less. We do house calls because there are patients who cannot come in and we don’t want to stop

caring for them.

We do house calls because we can make an impact. We can do a lot. We do house calls because we love it. We do

house calls because we believe in it.

Why do home visits?

Wherever our patients are The stories and faces

The secret napper

The secret napper is a favourite at the hospice. She is a six-year-old golden retriever, therapy dog who visits the residents on a weekly basis. While well-behaved, she has a habit of sneaking off when no one is looking. She doesn’t get into mischief; rather, she sneaks into patient’s rooms, curls up and has naps with them. She does this ever so quietly and ever so gently; so much so that most residents barely notice her presence.

However, if we can’t seem to find our little therapy puppy we have now learned to look on, under or beside the beds of patients. This is where our secret napper is usually to be found.

We met in the ICU. His cancer was Stage 4. No further treatment options. He was a “difficult” patient.

He was homeless. As it turns out he was also a colleague; a social worker, a man who worked in alcohol

and addictions, an artist, a son, a brother. Estranged from his family there was much he wanted to

accomplish in the little time he had.

He reconnected with his family and with his art. It’s a small apartment but it’s clean and smells of homemade

soup. Furniture is sparse. It has a cot in the living room, a ta-

ble and chairs, and one armchair - on loan.

On this visit, our patient’s son is there. A quiet boy. All dark

hair and big glasses. Listening. Then he tells us about his love

of history and how he stays up late reading. When we leave,

his mother follows us out. She’s worried. The boy knows that

his father is dying. Since finding out, he’s become cheerful.

Cheerful all the time. As though it’s his job to hold them all

together. He’s ten.

Palliative care is everybody’s business Palliative care as public health

“Health is created and lived by people within the settings of their everyday life; where they learn, work, play and love. Health is created by caring for oneself and others, by being able to take decisions and have control over one’s life circumstances, and by ensuring that the society one lives in creates conditions that allow the attainment of health by all its members.” (W.H.O. Ottawa Charter for Health Promotion, 1986)

Part of embracing a public health approach to palliative care is to understand and use community development methods and theories in our systems of care delivery. Fortunately, Ontario has an evidence-based framework for community development - the Kelley Community Capacity Model for Palliative Care. Additionally, palliative care public health initiatives exist nationally and worldwide. A number of best practice initiatives are being created, examined, promoted, facilitated or lead by the Division of Palliative Care.

Death: Something to Talk About. A Community Reading Initiative

Wave: A Memoir by Sonali Deraniyagala A gripping memoir of the author’s real-life experience as a result of losing her husband, two sons aged five and seven, and parents to the tsunami that struck Indonesia on Boxing Day 2004. An intense, brutally honest, and exquisite chronicle of grief and recovery.

The End of the Alphabet by CS Richardson. Ambrose Zephyr is informed that he has a mysterious illness and that he only has one month to live. With that news, he and his wife Zipper decide to travel the world according to the alphabet – from Amsterdam to Zanzibar. A beautiful tale about pursuing one’s dreams, searching for meaning, and learning about love.

The Boys or, Waiting for the Electrician’s Daughter by John Terpstra A gentle account about three boys with muscular dystrophy – the brothers of Hamilton author John Terpstra’s wife – and how they coped with progressive illness before eventually succumbing to the disease. A tapestry of humanity, woven with humour, faith, love, and the strength of relationships.

Many us are ill-prepared to face what lies ahead. In a death-denying society, how do we ready ourselves for our human fate? How do we prepare for the end of our lives?

Allan Kellehear, in his book Compassionate Cities, describes a public health approach and community development model for end-of-life care. He promotes mechanisms whereby communities reacquaint themselves with the nature of death, where citizens create social support systems to cope with the experience of dying.

Building on these concepts, the Division led the creation of an innovative community reading initiative entitled Death: Something to Talk About. The initiative is now a collaborative venture between the Division of Palliative Care, the Hamilton Public Library, Bryan Prince Bookseller and Dermody Funeral Home. Three books have been selected to encourage the public to read and talk about themes of death, dying, bereavement and loss. Our community partners will be holding a number of public education sessions, book club discussions and author readings throughout the coming year as part of the initiative.

By facilitating such dialogue amongst family and friends, at dining room tables, in coffee shops and on street corners across greater Hamilton, this reading initiative aims to increase public awareness about death and dying and lessen society’s discomfort facing death.

Where there's life, death is inevitable. And the greater

the fear of death, the greater the struggle to keep on living.

- Mo Yan

Our patients, families and friends All the arms that hold us

Our patients, families and friends change us. They support us to do the work we do.

From a patient:

I must very clearly say that when I found myself alone in my resolve, and beginning to waiver – wondering if others were right and I was being blind to it – in came Palliative Care who just simply reminded me I had a right to hold on to hope. That gave me the strength to pick up and fight for my strength that I knew I had. What I really want to be shared, is not about my fight and resolve, but of all the arms that held me up to do what I wanted. It’s who is on your journey with you. My footprints were rarely in the sand – others had me. We truly are all one.

From a physician’s spouse

I have to share my spouse with all those patients. But I wouldn’t have it any other way. Her kindness and compassion are what attracted me; those are gifts that should be shared. It often is a tough job, but I can see how rewarding it can be. I hear some of the stories – amazing stories –and I’ve learned a bit about life vicariously.

From a friend

How phenomenal it must be that those in palliative care get to witness the mystery of life and death and that patients allow them to be on that journey.

From a family member

I know my wife is on the last chapter of her life. Palliative care is helping me spend as many pages as possible with her; helping her to be comfortable; helping us write the end of her story.

Our future

Communication technologies, social media and the broader media are changing where, with whom, and how we think and have conversations about end-of-life.

As a Division, and individuals, we’re excited to explore new ways to have conversations with colleagues, learners and the broader public.

Communication

Our new faculty

What keeps any organization exciting is new blood with bold new ideas and knowledge. This year we are fortunate to have eight new faculty join the Division. We hope they will find a place to grow in their own way within the Division, Department and University.

Department of Family Medicine Michael G. DeGroote School of Medicine

Faculty of Health Sciences McMaster University

fhs.mcmaster.ca/fammed

@McMasterFamMed