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Discussion 4: Special Populations

6 months ago
CLOSED: This discussion has concluded.

Palliative care should be accessible to all, regardless of health, social or socioeconomic status. However, our Canadian care delivery model was developed with certain assumptions about the people receiving care; assumptions such as the care recipient has stable and secure housing, an informal support network (family and friends), a relatively predictable disease trajectory, the mobility to access their health care teams, the ability to communicate without language barriers to their health care provider team such things as pain, values, hopes and wishes. These are just some of the barriers facing special populations in Canada, and the list only gets at a small number of the issues they face.

Many vulnerable or underserviced populations don’t get referred to palliative care, or do not get referred early enough that it can make a difference while they are alive.

We are interested in new and original solutions to increase access to palliative care in underserved areas, and for special populations that may be particularly vulnerable.  Please share examples of how you have/your organization has bridged gaps for people with life-threatening illnesses and their families.


This consultation is now closed.


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  • CFHI_FCASS over 1 year ago
    Through our Call for Innovations in Palliative and End-of-Life Care (https://www.cfhi-fcass.ca/WhatWeDo/palliative-care), CFHI engaged with service provider organizations that are delivering innovative and effective care for children – through outreach and shared care models, respite services, and perinatal hospice – as well as the homeless and the vulnerably housed – through residential hospice, outreach models, and peer support models. The Paramedics and Palliative Care: Bringing Vital Services to Canadians (https://www.cfhi-fcass.ca/WhatWeDo/palliative-care/paramedics-and-palliative-care) project is a further example of a strategy that can help to close the gap for those who access 911 to meet their needs for palliative care. Other transferable lessons from CFHI collaboratives that could potentially be applied to improving access to care and service for special populations include: • engagement strategies for patient and family advisors and service provider organizations that are already trusted sources for services • adapting and adopting strategies for service provider education • implementing evaluation approaches that are culturally respectful • implementing sustainability strategies for person centred approaches to care
  • cnh920 over 1 year ago
    Cultural relevance and competence will go a long way to address the needs of these populations--and that shouldn't include just training for your staff but also outreach, community engagement, and partnership with people and organizations that are better connected to these populations. Many of the mentioned populations have been marginalized by medicine at some point in history and currently, through prejudices toward their culture/identity, traditions, and own healing practices. You need to build trust first to understand these communities better, and from there try to identify approaches that will work better than the standard practice. For populations with limited access, that might mean finding ways to consult remotely (e.g., telehealth), train community members to provide care that doesn't require a professional, and/or encourage administration to consider offering out-of-institution services and visits. At every step, people from the community should be consulted on the best way to bring palliative care to them.
  • Ruadh over 1 year ago
    We are very fortunate in that we have a vary large list of interpreters available for us to use. Also many of our instructions and directions are recorded and can be administered through the phone. In Toronto this is a real necessity. Transport from the various old persons homes are our main difficulty. Many of the homes charge the family for the transportation to and from hospital and if the patient is advised to have 20 treatments sometimes families will cut this down to 10 or even 5 treatments in order to save the large transportation fees. Thus the economics are compromising the best treatment options. Transportation should be covered by OHIP for patients receiving palliative cancer treatment.
  • CanadianVirtualHospice over 1 year ago
    http://VirtualHospice.ca aggregates content on palliative care and grief online improving the ability of Canadians, regardless of where they live to access evidence-informed content. We’ve engaged Indigenous communities, immigrants and refugees, families of children with life-limiting illness and conditions, adolescents and young adults, and others to identify their unique needs and to guide us in the development of digital health solutions. The http://LivingMyCulture.ca video series shares the stories of Indigenous people, immigrants and refugees from 11 cultures in 11 different languages. The videos support patients and their families by providing information about palliative care and addressing end-of-life concerns in a direct, yet culturally and spiritually sensitive, way. http://LivingMyCulture.ca empowers them to advocate for culturally- inclusive care while navigating the health system. It is also a useful tool for health care providers wishing to improve care outcomes by enhancing their knowledge and skills in providing care for a person from a different culture. Our site features written and video content about children and teens and videos from palliative care experts on topics such as accommodating cultural diversity, preparing for death and dying in long term care, palliative care and mental illness, and more. http://MyGrief.ca, Winner of two national innovation awards, includes 9 modules that enable Canadians to move through their grief from the comfort of their own home at any time and at no cost. It improves access to grief support, addressing barriers of cost and availability of in-person supports, and can be particularly useful for those in rural and remote communities. http://KidsGrief.ca is a series of bilingual learning modules that equips parents with tools to have difficult conversations with their children, support them with their grief and help them develop healthy coping strategies. Health care providers often use these free online grief resources to enhance their understanding and support for those who are grieving. http://Methadone4Pain.ca is a free, accredited online training course on methadone for analgesia in palliative care that assists health care providers to address patient and family misunderstandings about methadone. We are developing new resources to fill more gaps in the coming months and years.
  • arcticfox over 1 year ago
    Palliative care team is available for consultation for health care providers and families in rural communities. May not be able to travel out but will do all possible to support clients to remain at home and communities to enable this.
  • cklondon over 1 year ago
    In Ontario, we have a unique problem. Our group homes for disabled/differently-abled adults are managed by the Ministry of Social Services, and not the Ministry of Health. Developmental Service Workers (DSW's) who provide care in these homes, are very capable and well trained to deliver care to the residents and often get to know them so well they are more like family to them. They are able to communicate with those who cannot do so, and understand their needs, pain levels, etc... However, when someone in a group home is in need of palliative care, there is some support through our 'home care' LHIN community system for some resources, but the DSW's are very limited in being able to assist although they are very interested in doing so and are very capable. For example, in a regular palliative home situation, family members are taught how to give meds and do treatments for their dying family members but because of constraints dictated by their Ministry, DSW's are not able to do some of these tasks and so their residents must be transferred to hospitals or hospices for end of life care. This is very difficult for the staff, for the housemates, and for the resident themselves to be taken out of their 'home' during such a profound period of their life. All of their comforting and normal surroundings and care providers are removed and this is not by any means 'patient-centred'. We must work between the Ministries of Health and Long Term Care and the Ministry of Social Services to find some common ground which will support ALL people being able to palliate at home. Although we have managed these situations with some success in our area, it is generally not supported by the current legislation and there are many hoops to jump to make it happen. It needs to be an easier and more life-giving process for everyone involved.
  • PallRNKaren over 1 year ago
    The only problem we have faced is interpreter availability for our diverse population.
  • pcforkids over 1 year ago
    We have been able to support palliative care at home as far away as Nunavut. There needs to be community support, the family has to want to be at home, and the community nurses have had experience with some adult palliative care in the cases where we have been able to do this for children. It is a challenge, with the turnover of nurses and with the stress which occurs in the community.
  • pcforkids over 1 year ago
    In our tertiary care center, we are working on a model of perinatal hospice to support women and couples who have an in utero diagnosis of severe abnormalities who choose to continue their pregnancy, knowing that the child could die in utero, during delivery or shortly after birth. We are working on developing a policy so that these deliveries could occur closer to home rather than in the tertiary care center, which is what usually happens at present. Policies are being developed for the care of the child who is expected to die, to ensure comfort and focus on family time. The plan is to provide these policies to hospitals who do level 1 and level 2 deliveries so that the focus on comfort can be supported and the delivery can happen closer to home (in theory, at home with a midwife - in practice there are a lot of barriers to this) or where ever the woman/couple feel most comfortable.
  • pcforkids over 1 year ago
    Pediatric Project ECHO has a Palliative Care component jointly run by SickKds and CHEO and is a distributive model of education and support. Experts present brief education on specific topics, then an anonymous case is presented by a community provider and the challenges are discussed, encouraging the community partners to be the first to ask questions and give ideas for solutions. It is open to any and all who would like to participate and is regularly attended by 40-60 people (on a platform called ECHO). There are people from across Canada who attend, and one regularly joins from Africa. The purpose is to support the community partners to provide care closer to home, both with feedback from the sessions but also with connection with the "experts" who they have interacted with.
  • melmay over 1 year ago
    The Extra Mural Program in New Brunswick attempts to provide access equitably to all residents. In Saint John we have a high population living beneath the poverty line. Our program only makes exceptions to care (refuse care) if there is a blatant harm risk. We visit people in their home and if safety is an issue we will ask them to come into a clinic if possible. Our program will fund medications if needed and put in short term home maker support (provincially funded). Our service areas include special care homes, seniors assisted living residences, boarding homes. Palliative care is offered where the patient is, whenever possible.
  • kott over 1 year ago
    Most of the palliative care is only available in urban areas. Nothing in the rural remote and aboriginal areas. Providers with patient language preference should be employed when possible
  • palliumcanada over 1 year ago
    Pallium Canada agrees that palliative care should be accessible to all, regardless of their health, socioeconomic status, language and geographical location.Pallium has undertaken several different approaches and initiatives to integrate content and adapt courses and course delivery to better meet the needs of underserved populations. For example, Pallium through multiple collaborations and engagements with Indigenous communities, has initiated work to integrate Indigenous perspectives into existing courses rather than developing new community or population specific LEAP courses. This includes incorporating cultural competency training in our LEAP Facilitator Training Workshop to ensure that Indigenous people’s perspectives around palliative care and end-of-life care integrated into the existing courses. Our collaborative pilots have highlighted the importance of the LEAP sessions being held and hosted in a First Nations Community, jointly planned by Indigenous representatives (community and healthcare workers) and the local LEAP organizers, and that community information sessions be offered parallel to each course. Facilitation of this kind of course requires a very high level of adaptability, a deep appreciation of the history of trauma undergone by Canadian Indigenous people and the intergenerational effects of colonialism, in addition to a clear sense of the local landscape from a culture, tradition, beliefs and resources point of view. Combined with our compassionate communities program and hundreds of trained facilitators across the country, Pallium Canada, is well positioned to work with immigrant and refugee communities. We have recently started engaging some of our LEAP facilitators who have special experience in this area to start exploring more integration of this into the courseware. Early discussions to integrate minority community perspectives and cultural competencies into Pallium’s compassionate communities programs, for example, have already begun. Pallium’s approach is to provide common tools, supports, networking and linkages for communities across the country that can be leveraged and adapted at the local level to meet local community needs. The first French adaptations of LEAP was undertaken in 2005. Several LEAP courses, including LEAP Core, LEAP Mini and LEAP LTC as well as our Pallium Reference clinical manual and many of our learning videos are now available in French adaptations and further adaptation of the other course are underway. No other palliative care CPD program is undertaking adaptations at the rate that Pallium Canada is. Most importantly in this area, is the capacity of Pallium Canada’s emerging compassionate communities program and community palliative care awareness work to contribute to addressing palliative care needs in minority language situations.Finally, Pallium Canada has initiated work with partners and palliative care experts who work closely with homeless groups to develop a LEAP Equity that addresses the needs of homeless and other disenfranchised or vulnerable persons. This is an important undertaking, but one that will require continued support in the future to remain sustainable.
  • jcruikshank over 1 year ago
    The CHPCA is committed to identifying the unique needs of immigrants and refugees; rural, remote and indigenous communities; children, adolescents and young adults; LGBTQ2S communities and others, and to advocating for their identification and consideration at the government level. Both caregivers and patients may be members of special populations and it is essential that they be able to access resources and care that are appropriate to their needs in order to be fully served by the healthcare system. We are committed to working with pediatric care-providers and volunteers to ensure the needs of all hospice palliative care patients are better served. CHPCA has set an expectation for healthcare providers to assess caregiver quality of life as part of routine practice, as well as emphasizing the importance of training and support for palliative care volunteers across all settings and the establishment of just-in-time learning. CHPCA has also committed to advocate for the support of indigenous communities to receivepalliative care where and how they wish to receive it while providing the required resources, while identifying and removing jurisdictional/bureaucratic barriers to care at all government and band levels. Digital health resources can also increase access to palliative resources for individuals in geographically isolated communities.
  • Pall-life over 1 year ago
    Please include the members of the disabled community in palliative care planning. Accepting that there is a diversity of 'differently abled,' their voices need to be heard.
    Hide reply (1)
    • alliedhealthworker over 1 year ago
      I agree. I also think there's a bias towards assuming incapacity despite the fact that a) capacity is task specific, time-bound, etc. and b) even if capacity for the purpose of decision-making is lacking for a specific decision, it does not mean that someone is incapable of expressing their wishes. I would be concerned with communication disorders masking capacity by way of someone not being able to express through the means that many providers are used to (i.e., verbally).
  • veejay over 1 year ago
    In Scarborough and Rouge Hospital, we utilize translation phones and have live interpreters available for our top 2 languages: Chinese and Tamil. The CCRC pathway allows us to leverage existing resources in the hospital where these interpreters are accessible; and in the community where we advocate for our pts to have language-specific services when possible. We also have our IPOS symptom monitoring tool in Chinese; as well as our ACP booklets in Chinese and Tamil so they're more accessible
  • alliedhealthworker over 1 year ago
    Our facility uses translation phones (i.e., translators available 24/7 over the phone) in addition to multilingual pain scales and other tools. Our palliative care unit team is also particularly sensitive to communication disorders and uses communication boards, consults with speech-language pathologists for individual patient strategies, voice amplifiers for those with low volume, pockettalkers for those with hearing loss who do not have hearing aids, etc.
  • PallMedDoc over 1 year ago
    http://www.cbc.ca/news/canada/calgary/palliative-care-calgary-homeless-1.3966695 CAMPP (Calgary Allied Mobile Palliative Program) was started as a mobile team to provide palliative care for the vulnerably housed.Providing funding to patients and families in rural settings to allow hiring of caregivers to allow patients to stay at home as long as possible near end of life, has worked well so far.