A presentation made by Frankie Vitone during the free public forum "Continuing the Conversation: a discussion on preparing for end-of-life care" on February 6, 2014 at the United Steelworkers Hall in Sudbury, Ontario.
Frankie Vitone is the Senior Director of Care Coordination at the North East Community Care Access Centre.
Learn more about the forum at http://www.hsnsudbury.ca/events
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End of Life Public Forum 2 - Frankie Vitone - Feb. 6, 2014
1.
2. An Evolving System
• New technology and best practice
• Changing community demographics,
population needs
• Need for collaboration
• Right care, right place, right time, right
provider
3. Hospice/Palliative Care – a growing issue?
• Need to support patients through their
journey
• Raison d’être for North East Hospice Palliative
Care Network, a network made up of home,
hospital, and hospice providers and
stakeholders
• Goal is to work with the North East LHIN to
improve palliative care across the northeast
7. Community
• A number of palliative services providers in
the community:
–
–
–
–
–
–
Care providers (primary)
CCAC
Community Support Services and volunteer providers
Hospital outpatient and outreach/inpatient
Long-Term Care Homes
Residential Hospice and outreach
8. North East CCAC – Professional Services
• Provide professional services:
– Care Coordination
– Therapies (Occupational and physiotherapy,
dietician, speech-language pathologist, social
worker) - internal and contracted providers
– Nursing (clinic, in-home, shift), primarily
contracted services through service providers
9. North East CCAC – Support Services
• Provide support services:
– Personal support – contracted service
– Short-term medical equipment rental
– Medical supply provision
10. North East CCAC –
Enhancing End of Life Care
• Internal initiatives to enhance chronic disease
management and end of life care
• Enhanced and new services
• Specialized knowledge and expertise
11. North East CCAC –
Enhanced End of Life Services
Enhanced personal care, nursing and therapy
services to support patients with end of life care
needs (last 90 days of life)
12. North East CCAC
Chronic Disease/Palliative Care Initiatives
•
•
•
•
Rapid Response and Telehomecare Nursing
Palliative Nurse Practitioner Program
Specialized Palliative Care Coordination Team
Enhanced palliative training for staff (multidisciplinary
palliative team pilot)
• Integrated service planning pathways and guidelines
• Provision of therapy services, medical equipment/supplies for
patients at Maison Vale Hospice
13. Warm Hearts
• Interdisciplinary education, volunteer visiting
and the Bereavement Follow-up Program
since 1989
• Accredited organization, screening process
and intensive training for volunteers
14. Warm Hearts
• Sponsor agency for the Interdisciplinary
Education Program
• www.warmhearts.ca or call 705-677-0077
• Recent/ongoing integration with Maison Vale
Hospice
15. Maison Vale Hospice
Community Outreach Services
• Shared Care Team for patients with complex
needs
– Specialized nursing
– Supportive care
– Physician/RN on-call, 24/7
– Consultation and resource
• Advanced Care Planning Strategy
16. HSN Palliative Services – Supportive Care
• Specialized individual and family counselling
• Palliative and end of life care for First Nations, Inuit, and
Métis patients and families
• Assistance with practical and financial matters
• Specialized nutrition counselling
• Physiotherapy for symptom management
• Grief counselling for caregivers and families
17. HSN Palliative Services –
Symptom Management Clinic
•
•
•
•
Control of pain and other symptoms of cancer
Emotional, social and spiritual care
Educate for informed decision-making
Grief counselling for caregivers and families
18. Maison Vale Hospice - Residential Care
• Maison Vale Hospice provides residential
hospice palliative care in a homelike
environment
• Psycho-Social/Spiritual Care Program
• Visiting Hospice Volunteer Program
19. Maison Vale Hospice –
Admission Criteria
• Placement provided by the NE CCAC - 310-CCAC
• Patient criteria:
– Over the age of 16
– “End stage” medical condition, with a life expectancy of three
(3) months or less
– Priority given to patients who live alone and cannot manage at
home alone, or hospital in-patient unable to return home
wishing for EOL care with the Hospice
– Has symptoms that can be managed by residential hospice staff
20. HSN Inpatient Palliative Care
• Focus on pain and symptom management that
cannot be provided in a community setting
• HSN Palliative Care Unit at HSN
– 6 beds
– Open to any palliative hospital patient whose EOL care
period is less than 4 weeks, or community patient with
care period of less than 3 weeks
21. Conclusion
• Providers working together to enhance care
and resources to improve information,
options and outcomes for patients and
families.
• For information please contact:
– www.northeasthealthline.ca or,
– 310-CCAC Information and Referral
Hinweis der Redaktion
Good evening. I’d like to thank you for being here this evening. Given the attendance at these two End-of-Life Care public forums, I think it is safe to say that we don’t need to hold a focus group to determine whether or not people care about the topic!
One of the things I have loved most about my career has been the variety of new and interesting experiences available. The health care system is a lot of things, but boring is not one of them.
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I have been involved in the community end of the health care system for the past 20 years, and we have seen remarkable changes in that time. Not only in technology and best practice, but also in community demographics, health care needs of the population, and in particular, the realization that for our health care system to work for our patients, all of the players had to act like we were a system from the beginning to the end of the patient’s care journey, and indeed from the start of life, until the very end.
We have had a great deal of success in addressing barriers and improving care through collaboration, helping patients receive the right care, at the right time, from the right provider.
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So, it made sense to apply this collaborative philosophy to the growing issue of End of Life care.
It seems odd to say “growing issue”, doesn’t it? After all, they say death is one of only two sure things in life. But it is a sensitive topic, one that for many years people have been hesitant to talk about. As you have heard many times over these past two forums, however, it is not a topic we can afford to ignore any longer. The demographics of our society simply won’t allow it, but more than that, we shouldn’t allow it.
Dying with dignity, in relative comfort and peace, is something we all want, and needs to be considered a rite of passage.
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The North East Hospice Palliative Care Network, which I have been involved with since it began 8 years ago as the North East End of Life Network, is working closely with the North East LHIN to improve palliative care across the northeast.
The purpose of the Network is to work together to make the entire spectrum of hospice/palliative care needs and providers – institutional and community services, education for caregivers and patients alike, direct care, support – work as a continuum of care that supports a safe, effective, and seamless patient experience.
Because…
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As you can see, the number of community support services available are numerous – so numerous, it can be difficult to make sense of it all without a collaborative effort.
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We intend to transform delivery to develop a comprehensive, integrated continuum of care and support that wraps delivery around the adult, and their family and informal caregivers, and responds to their goals, needs and personal contexts through a virtual, extended inter-professional team.
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In order to ensure a smooth journey, we must know who is doing what, and ensure that people are receiving the right care, in the right place, at the right time, from the right provider.
We are working together to develop a system that can meet the varying levels of care and expertise that our patients will require.
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There are a number of services and providers in the community.
They include: CCAC, primary care providers, and a variety of publicly funded community support services and volunteer providers, as well as hospital outpatient, outreach and inpatient services, residential hospice, and long-term care homes.
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The CCAC provides:
Professional services in home, clinic, and congregate settings. Care coordination, occupational and physiotherapy, speech language pathology, dieticain and social work, both internal and contracted.
Clinic, in-home, and shift nursing, primarily contracted through our service providers.
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The CCAC also provides support services in the home, such as personal support, short-term medical equipment rental, and medical supply provision, the latter two of which we will also provide in the hospice setting.
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For palliative and end-of-life patients in the community, however, there are programs that go above regular service.
We, and I believe all of our partners, recognize that the End of Life journey is a journey like no other, and requires specialized knowledge and expertise.
The CCAC has been working with partners and providers to enhance End of Life care in the home.
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Enhanced hours are available to assist patients in community or returning home from hospital needing end of life care to die in dignity at home.
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Our Rapid Response nursing program is designed to smooth transitions from hospital to home for at risk patients and prevent readmission to hospital, with a focus on patients with chronic diseases.
The Telehomecare nursing program provides support for patients with Chronic Obstructive Pulmonary Disorder and Heart Failure. While these programs are not specifically End of Life programs, they do provide care and support for people with chronic disease that are life threatening.
Our Palliative Nurse Practitioner program allows us to provide in-home assessments and consultation, and also provides a liaison between the CCAC, Regional Cancer Program at Health Sciences North, and Maison Vale Hospice. These palliative nurse practitioners work closely with a physician who specializes in end of life care. This care is critical, particularly for patients with no primary care. (Stay on slide)
Our specialized palliative care coordination team is provided with education specific to and has enhanced knowledge of the end of life journey. The care coordinators on this team have a sole focus of supporting patients on their end of life journey.
Beyond supporting patients in the home, the care coordinators have a focus of avoiding Emergency Department visits and hospital admissions through proper care and pain and symptom management.
Interdisciplinary therapies can also play a critical role in end of life care. The CCAC has facilitated the ability of our therapists to receive enhance palliative training, and we are currently conducting an enhanced multidisciplinary palliative team pilot in Sudbury that takes a holistic view of all services that are required by patients on their end of life journey.
We are working closely with service providers to develop service planning pathways and guidelines specific to our palliative patients that seek to ensure continuity of care. are carried out consistently as intended.
We work closely with Maison Vale Hospice to provide necessary equipment and supplies to our patients, such as intravenous pumps for pain medication, wheelchairs and walkers, as well as the Ontario Drug Benefit.
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Warm Hearts has done an excellent job of providing essential end-of-life services such as education, volunteer visiting and the Bereavement Follow-up Program to help families through the grieving process since 1989. An accredited organization, Warm Hearts volunteers go through a screening process and complete thirty hours of instruction on palliative care philosophy, communication, stress management, and bereavement.
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As the sponsor agency for the Interdisciplinary Education Program, their learning programs for front-line health professionals offer orientation to basic skills and concepts of palliative care, as well as advanced palliative care education based on national principles and norms of practice as set out by the Canadian Hospice Palliative Care Association.
This helps to foster professional development of essential skills, knowledge and attitudes to help the dying individual and family through the experience of dying, from all angles - physically, socially, emotionally and spiritually. They also provide other learning opportunities through their Palliative Caregivers Learning Centre. (Website is www.warmhearts.ca or call 705-677-0077.)
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A very exciting development has been the integration of Warm Hearts - Palliative Caregivers Sudbury/Manitoulin, with the Maison Vale Hospice. This represents an excellent fit given the caring nature of both organizations. The trained Warmhearts Volunteer Visitors with continue to be called Warmhearts – because that is who they are.
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When people think of a hospice, what they usually envision is the residential care. However, beyond the residential care there are a number of community supports available through Maison Vale Hospice in addition to the volunteer program through their integration with Warm Hearts.Included in their services is a shared-care team that provides expert consultation and care for patients with complex physical, emotional, and spiritual needs in their home along with their families and provide education and additional support services to enable clients to live and die in the location of their choice. The Shared Care Team also provides pain and symptom management consultation to front line providers. Maison Vale Hospice is also engaging with the North East Hospice Palliative Care Network to develop an Advanced Care Planning strategy to promote and support patient planning.
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Through the Regional Cancer Program, Health Sciences North also reaches out into the community to support the end of life journey for cancer patients.
This is accomplished through the Supportive care services Multidisciplinary team that includes
Dieticians, Social Workers, Physiotherapists, Neuropsychologist, Speech and Language Pathologists
They provide specialized individual and family counselling, palliative and end of life care for First Nations, Inuit, and Métis patients and families, assistance with practical and financial matters, specialized nutrition counselling, physiotherapy for symptom management, and grief counselling for caregivers and families. (Next Slide)
The HSN Symptom Management Clinic is available for all adult cancer patients who are dealing with the symptoms and stress of a life-threatening cancer diagnosis.
Their goal is to provide the highest quality of life for people facing advanced cancer, providing compassionate, holistic care with expertise in pain and symptom management.
The Symptom Management team comprises Family Doctors, Registered Nurses, Advanced Practice Nurses, Administrative Associates and other allied health such as social workers and dieticians.
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They seek to provide pain and symptom control, offer emotional, social and spiritual care to patients and families that respects individual cultures values and beliefs, provide education related to end-of-life goals and options while creating an environment that encourages patients and families to make informed choices, encourage patients to ask questions about their care and ensure their decisions and choices are heard, and offer bereavement care for those who grieve.
All of these community services – HSN, Maison Vale Hospice, Warm Hearts, CCAC and nursing providers – work closely and collaboratively to assist people on their end of life journey.
Of course, there are those for whom residential care is the only option.
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It is most often the goal by the organizations involved in the network to allow people to be properly supported and be able to spend as much of their end-of-life journey in the comfort of their homes. For some, this is also where they hope the journey will end, but others seek a sort of middle ground – not home, but not a hospital.
When staying home is no longer an option, Maison Vale Hospice provides residential hospice palliative care for Sudbury-Manitoulin. With the compassionate support and quality care they offer to individuals and families in a homelike environment, residents are encouraged to realize their full potential to live even when they are dying while having their physical, psycho-social, spiritual, and practical needs met.
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The Psycho-Social/Spiritual Care Program responds to these and the religious needs of residents, families, and even staff and volunteers of the Hospice. They also have an excellent and extensive volunteer program, covering everything from companionship and active listening, to the Visiting Hospice Volunteer Program that offers compassionate bedside support, including social and emotional support, help with general activities of daily living, accompaniment of clients to appointments, and caregiver respite.
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Again, however, we return to a theme – the right care, in the right place, at the right time. Through the CCAC Placement team, we are able to provide direct home to hospice admissions and are streamlining this process as much as possible in recognition that time is very often of the essence. There is admission criteria for community residential hospice care, and we must always be certain that we are meeting the needs of patients in a safe and appropriate environment.
Admission criteria for placement at Maison Vale Hospice is as follows:
Over the age of 16
“End stage” medical condition, with a life expectancy of three (3) months or less
(Stay on slide)
Priority given to patients who Live alone and cannot manage at home alone, or hospital in-patient unable to return home wishing for EOL care with the Hospice
Has symptoms that can be managed by residential hospice staff
Maison Vale Hospice offers excellent care in a peaceful setting, and many lifelong friendships and loyalties are formed during this period.
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Not long ago, people who did not die suddenly, expected to die in the hospital, or perhaps a nursing home. It was taken as a given for many that the hospital was the only place where they would receive enough care and medication to see them through their final days. But this was also at odds with what many people wanted, which was to die in a non-clinical setting. Unfortunately, the wish to die at home is not always feasible, or even possible. There are sometimes patients whose care on their end-of-life journey is too complex to be managed in the home or hospice setting. In those instances, the palliative care unit at Health Sciences North offers excellent care, taking a multidisciplinary approach to address physical, emotional, spiritual, and psychosocial concerns. There is, of course, a focus on pain and symptom management that cannot be provided in a community setting.
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The unit’s 6 dedicated beds are available not only for cancer patients, but indeed for any patient within the hospital who requires end of life care for a period that is expected to be less than 4 weeks, and also for patients from the community who may require hospital care for a period of time – usually less than 3 weeks – before they are stable enough return to the community setting. As noted, the admission criteria is strict and the goal, where possible, is to have individuals cared for in the community for as long as possible on their end-of-life journey.
Just a little while ago you heard the HSN Medical Lead for Palliative Care, Dr. Andrew Knight, speak to the medical considerations in end-of-life care. HSN is also currently involved in an education initiative to train all nurses in its medical program on palliative and end-of-life best practices, using information from the Maison Vale Hospice to ensure nurses are able to deliver enhanced care at the bedside.
It is this kind of expertise and dedication to continuous quality improvement that makes Dr. Knight, the palliative unit and staff, and HSN, such valuable partners to have at the table.
It should be noted that receiving palliative care in hospital is not truly a “choice” inasmuch as it is a happenstance – you cannot book a palliative bed at HSN. If one is admitted and is simply too sick with needs too complex, and are too far along in the end of life journey to leave, it may be the case that the journey ends in hospital.
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We must make as much information as we can available. People can visit www.northeasthealthline.ca for more information on palliative and end-of-life care in the northeast.
They can also call 310-CCAC to speak with Information and Referral staff.
One thing is abundantly clear – we need greater access to hospice care in the north, and more of it.
Because there are so many options, and so many potential scenarios in which a person may find themselves at the end of their lives, it is important that we are clear on the options that exist, and that the providers are working together to do the best we can in ensuring peoples’ end-of-life journeys conform as closely as possible to their wishes.
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This, of course, is not always possible – the end-of-life journey has more twists and turns than one can imagine, and is possibly the most personal and subjective journey one can take. No two stories are the same.
We will continue to make enhancements and to provide the best care we possibly can. We know in the coming years the need for End-of-Life and palliative care will require an even greater commitment in resources, but also more effective use of resources.
We cannot shy away from these discussions because it is too painful to acknowledge that the end of life will eventually come. Indeed, it is one of the few things we all have in common. The fact that you are here and have shown so much interest in this topic confirms that.
On behalf of the Northeast Hospice Palliative Care Network, I offer my sincere thanks. I hope this information has been useful to you.
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