Discussion 4.2: Special Populations – Increasing Access | A Framework for Palliative Care | Let's Talk Health

IE10 and below are not supported.

Contact us for any help on browser support

You need to be signed in to add your comment.

Discussion 4.2: Special Populations – Increasing Access

6 months ago

How can we improve access to palliative care for special populations?


This consultation is now closed. 

***********************************************

  • LovelyKatieLumps 4 months ago
    It has been a barrier for me to find pertinent, relevant information as a thirty-something with terminal cancer. I am always the youngest by decades in many groups that I take part in because my options are; sign up for the programming at the local nursing home, or don’t get the psychosocial/peer support at all. Another assumption made by the palliative model is that those who require palliative care are geriatric. How do adolescents and young adults who are looking for palliative resources find the support? Unless patients are actively seeking out information, using the correct oncology jargon and knowing the correct organizations to contact (assuming these organizations are promoting programs and aids) needs go unmet. When the oncologist is there to treat my cancer, who do I ask about psychosocial support or spiritual support or social support? Between uncomfortable questions (my fear of dying or supports for my parents dealing with a daughter with terminal cancer) and a bit of denial, how do we get the palliative support – especially with individuals who need the support but don’t have a voice. We need a list of accessible palliative resources through the hospital or attending physician instead of being left to our own devices. It’s impossible to know what you don’t know (organizations, resources, health care professionals, programs, etc.).
    Hide reply (1)
    • Marnie 4 months ago
      Thank you for taking part in this. The voices of those living the experience are, In My Humble Opinion (IMHO), the most important.
  • JusticeinDying 4 months ago
    Education, Education, Education.A bio-psycho-social- spiritual lens of approaching the entire person ( and the people that they love).Paying attention to who teaches who? Our First Nations peoples have been under-represented as well as many other populations that oftentimes get lost in our ‘good intentions’ of care.Bringing a social lens- and a social model of care to the forefront in Canadian education on dying will provide insight to the gaps we need to be addressing, in an open and honest way.
  • SLD 4 months ago
    As a volunteer, I have seen all types of people enter palliative care, from a person living on the street to a very wealthy person, and it becomes the great equalizer as everyone in that time needs support. These centers such as ours, need financial support. Ours does not distinguish between a wealthy or not, care is care. It then would rest on the government to make it a priority and for those healthy to either do some volunteer time to help with costs and/or donate what they can.
  • Marnie 5 months ago
    How can we improve access to palliative care for EVERYONE?!?!? Access to palliative care is inaccessible for most people, not just special populations. Offer more palliative care options; offer more palliative care places; provide more financial coverage for palliative care as it is too often financially inaccessible and not just for your "special populations". With regards to special populations though, provide more and better accommodations for them, whether it be with regards to food, languages, holidays, special events, decorations, … . Be more supportive and welcoming. Help them be less isolated and more "at home".
    Hide reply (1)
    • Tia 4 months ago
      and don't put so many hurdles to receiving palliative care that MAiD becomes the only viable option. That would be just plain irresponsible.
  • trashpanda 5 months ago
    The idea that palliative care should be provided by yet another subspecialty group only is one that really must be fought with vigour to allow increased access to palliative care. There will be groups interested in sealing off this type of care from being provided by general practioners and I think this is a huge mistake. Health care systems which provide good generalist care are the strongest and would provide much better access than having palliative care as a separate specialty that GPs then refer to in all cases. Again, most palliative care should be available from a GP or other primary care provider, close to the patients home, and should not mandate in all cases a referral to someone who has chosen to label themselves as a palliative care provider.
    Hide reply (1)
    • Compassion 4 months ago
      Yes, 'all' health care professionals need to be educated and receive mentoring in providing the palliative approach to care but this does not rule out the need for 'specialized palliative care teams' that provide the expertise for those living with 'uncontrolled' symptom burdens. This is indeed a specialty. More specialized palliative care teams throughout Canada would help to avoid the heart wrenching stories of people experiencing uncontrolled suffering at end of life. The majority of support and care should be through the Primary Care team, but 'all' areas of Canada 'needs' specialized palliative care support so that all Canadians would be assured of adequate symptom control till end of life. Modern medicine has made this possible but it is not practiced throughout Canada. Access to palliative care begins with the Primary Care Team at all levels of care and for all populations. All Primary Care Teams therefore need to receive education and mentoring in the palliative approach to care and to know when the expertise of the specialized Palliative Care Teams need to be sought. If there are sufficient specialized Palliative Care Teams throughout all regions of Canada, then 'all' populations can be served, even those located in very remote areas using 'virtual' methods of extending care and mentoring.
  • lorlorntor 4 months ago
    I'm disturbed that palliative care in Quebec has suffered a setback since physician assisted suicide has come in. We need to improve access to life for everyone, and within that, palliative care.
  • ClinicalPsych 4 months ago
    A person is a person - regardless of any inclusion in the special population definition. Attitude, gratitude, kindness and humanity 'should' balance us all. To increase access, you education those who would have contact with the special population people on palliative issues. That may be health care, mental health care, judicial and legal system, or even the pilots that fly in and out of small communities. The more that is shared, the more people know, the more those people can share.
  • pcsbv 4 months ago
    Access is a universal problem. Palliative care is not always available when needed in urban centres, and in rural areas the only option when home care is no longer practicable is admission to hospital. That is not good care , nor good use of acute care facilities. Should a residential hospice bed become available, it requires the patient to be moved away from their home, community and social support structure. It also places a major burden of travel on the family. This is not fair - access to residential hospice care should not depend on one's address. Yet provincial health services seem very reluctant to support community initiatives to provide residential resources outside urban centres. Hopefully Bill C-277 will help to resolve this inconsistency.
  • bjpalliative 4 months ago
    My answer is 4.1. Vulnerable populations do not have access to the "marketing" strategies that the rest of us do. Face-to-face communication, it seems to me, is the only way that that anyone can increase awareness in vulnerable populations. People use social media all day every day and think that is communication. Real communication happens when people meet together, face-to-face, especially about such an important and meaningful topic.
  • HPCReady 4 months ago
    We need to have more health care providers educated and supported in the provision of a palliative approach, palliative care and end of life care.I’m not sure that ‘opportunity to access’ is always the issue with access. It also has much to do with individuals and communities prior experiences/beliefs about the healthcare system and the people who work in it.
  • Canadianmaggie 4 months ago
    I think we need to make it easier for all members of an individual's Care Team to be able to access palliative care. In my work, a family physician has to make the referral to the palliative program. I often have clients who do not have a family physician, and this rule delays accessing services in a timely manner.
  • Buffy70 4 months ago
    Special populations and remote areas are having a problem with just having a doctor or nurses and have no palliative care or end of life options. The government needs to do more to help these people. Put our taxes to better use in helping Canadians.
  • Sherry Moran 4 months ago
    I defer to experts to come up with ways to improve access but would stipulate that the suffering person should have access to palliative care and/or a medically assisted death.
  • Janus 5 months ago
    I am concerned about a number of special populations, specifically, those in prisons; those in mental health institutions; our Indigenous Peoples who live on and off reserves, and in remote Northern regions; those who are living in various settings with Down's Syndrome or who are differently abled with varying intellectual capabilities; with the homeless; and with impoverished seniors. The approaches must be as distinctive as the environments in which these cohorts are found. All of these individuals must have access to powerful patient advocates who can intervene with physicians and health care providers, at their request. Many of these groups do not have loved ones who can intervene on their behalf and often receive a lower standard of care than is the case for general populations of Canadians. We owe them a debt of care that is on a par with that received by other Canadians. This means that in various circumstances they must be able to avail themselves of interlocutors, if they wish to do so. The Allan Memorial Institute case, involving the criminally abusive treatment of mental health patients in Canada, including frontal lobotomies and other experiments, is one example where we failed to uphold our legal, medical and moral standards of care towards patients. These and other court cases, litigated in federal and superior courts, including the Sue Rodriguez case, are cautionary tales about the safeguards that are needed in assuring special populations of proactively offered palliative care. Can we trust, for example, Canada's federal prisons to provide compassionate palliative care to its inmates - the majority of whom are Indigenous Peoples? This, I remind you, is the same federal system that allowed horrendous deaths to occur in cases that became the subject of federal inquiries (i.e. Ashley Smith, Edward Christopher Snowshoe) involving very young Indigenous offenders who committed suicide in solitary confinement, while Correctional officers were in those very corridors. Little has changed, as the Correctional Investigator of Canada attests, so why aren't Health Canada and PHAC engaging Correctional Services Canada in a new palliative care strategy for our underserved prisoners in federal institutions? Dogs and cats in SPCA settings receive better medical care, that is more compassionate in nature. It is a disgrace. What happens to mentally challenged adults, including those with Down's Syndrome, who lacking family members to intercede on their behalf at the end of life, have no one to speak for them? Do we entrust their care to just anyone, when there were laws on the books for years that allowed them to be forced to undergo sterilization so that they could not reproduce? And, who conducted these enforced surgeries where no duly authorized consent was granted? Physicians in institutional settings. That is why I want ironclad protections put in place for palliative care directed to special populations. No one should have to come before the courts - after people have died due to negligence or to inhumane treatment - to seek a remedy when we could have put safeguards in place in the first instance. I do not want any of these special populations - including impoverished seniors who are often abused by caregivers and even family members - to be at the mercy of caregivers who dictate what is to become of them, including whether to take life-saving measures at the end of life and whether they are to be resuscitated, for example. What measures have HC and PHAC taken to educate Canadians about the need to have a Power of Attorney document for healthcare and to include DNR and other provisions, including life-saving measures to be employed at the end of life, if these are deemed desirable by the individual? Consistent with the section 15 guarantees of the Canadian Charter of Rights and Freedoms, we should be reaching out federally to ensure that there are special provisions in place for these special populations to assure they receive palliative care that is of a very high standard of care.
  • CCBB_1544 5 months ago
    Make it available 24/7 in hospitals and have special teams that can go out ion the community to a dying person if they are in their home.
  • Katherine 5 months ago
    For some people, specialized facilities may best serve their needs. A great example is the Mission Hospice in Ottawa and the Journey Home hospice in Toronto. People who are homeless or underhoused need a range of services not available in a standard hospice, including flexibility and understanding of their lives.
    Hide reply (1)
    • Jvangennip 5 months ago
      Yes, I recently was able to visit the Mission Hospice in Ottawa and was so impressed. They are also working on a project that brings palliative care into rooming houses - I'm learning that palliative care does not need to happen in a specific location.Chronic homelessness is basically a palliative diagnosis already, trimming an average of 40% or 30 years off a person's life. It makes sense for communities to develop specific palliative care programs (hospice beds and outreach programs) that serve this population. (It makes more sense to just house them in the first place of course, but I digress.)
  • BSlawich 5 months ago
    In this case, more physical locations in terms of brick and mortar buildings as well as staff will be needed in order to increase spaces that are already woefully low when compared to the demand for services.
  • QueenB 5 months ago
    Create clinics or facilities that are staffed by all health care providers that are required in one location. With options to bring in people to help patients with language barriers and religious needs.
  • QueenB 5 months ago
    Create clinics that are staffed by all health care providers that are required in one location.
  • sab472 5 months ago
    It would be helpful to have access to more resources and information materials for people living with neurological conditions. Often these conditions have features and courses that present unique challenges for people and their families. Alzheimer's disease and Parkinson's disease especially.
    Hide reply (1)
  • lgshaver 5 months ago
    Standardizing undergraduate medical education in the Palliative Approach to Care so more Primary Care physicians will be able to provide services.Providing PC services (moreso the psychosocial care) through tele-health systems or even skype for people in rural and remote regions. This has been shown to be very effective, and has leveraged the services of other providers, like nurse practitioners. Provide more funding for psychological counselling, home supports, etc. Provide funding to physician's (and other HCPs) in rural and remote regions to cover the costs of Pallium Canada's online continued education modules. Encourage provinces to add billing fee codes for primary care physicians to consult with palliative care specialists when necessary, which will keep provision of services at the primary care level and thereby reduce burden on specialists. It will also improve capacity of HCPs in more rural and remote regions to provide palliative services.All Canadian medical schools have recently implemented basic palliative care education in curricula, but the current physician workforce has not been adequately trained in palliative care competencies (Covenant Health Palliative Institute, 2016). Pallium Canada is a leading provider of palliative care education in Canada, though mainly through in-person workshops (Pallium, 2016). These workshops had a 9-fold increase in program participants between 2014/15 and 2015/16 (Pallium, 2016), supporting that there is increasing interest in additional palliative care training. Studies have shown that online palliative care education for primary care physicians can improve clinical outcomes and quality of life for patients (Pelayo-Alvarez et al., 2011; Pelayo-Alvarez et al., 2013). There are many barriers to in-person workshops, as they are usually higher-cost and require significant resources to deliver, considering Canada’s expansive geographical area. Thus, delivering a low-cost online module is a feasible option for educating the current workforce. Since more rural physicians will be able to access the training online, this addresses inequity in access to palliative services that are experienced by people living in rural areas (Barbera et al., 2015).Finally, health policy changes are needed to improve access to palliative care benefits and reduce financial barriers for patients and their families in accessing home care support, medications, caregiver respite, bereavement support. The current financial burden on patients suffering from chronic or life-limiting conditions, and on their families or care-givers, is inequitable. Socioeconomic barriers in access to care and support services must be reduced, as those without the financial means often cannot afford such services (Barbera et al., 2015). This is particularly so for home care services, prescription medications, and counselling/support therapy—all of which are so essential to quality of life. The inequitable access could be part of the reason why patients with cancer who are from low socio-economic neighbourhoods are less likely to pursue palliative care services at the end of life and instead are more likely to pursue aggressive care, such as chemotherapy, and even more likely to use it in the last few weeks of life (Barbera et al., 2015). This costs the health care system more money, but above all, it costs patients in terms of quality of life.Barbera, L., Seow, H., Sutradhar, R., Chu, A., Burge, F., Fassbender, K., . . . Potapov, A. (2015). Quality of end-of-life cancer care in Canada: a retrospective four-province study using administrative health care data. Curr Oncol, 22(5), 341-355. doi:10.3747/co.22.2636.Covenant Health Palliative Institute. (2016, November 6). Palliative care matters: how Canada’s health system needs to change. Consensus statement of the palliative care matters lay panel. Ottawa, ON: Covenant Health. Retrieved from: https://static1.squarespace.com/static/5755e91b044262d8f43cf6fa/t/5838878c9f74566f0d65ac72/1480099731622/PCM_+ConsensusStatement__Proof2.pdfPallium Canada. (2016). Annual report 2015-2016. Retrieved from: http://pallium.ca/infoware/AGM2015.pdf on November 20, 2017.Pelayo-Alvarez, M., Perez-Hoyos, S., & Agra-Varela, Y. (2013). Clinical effectiveness of online training in palliative care of primary care physicians. Journal of Palliative Medicine, 16(10). doi:10.1089/jpm.2013.0005. Pelayo-Alvarez, M., Cebrian, D., Areosa, A., Agra, Y., Izquierdo, J. & Buendia, F. (2011). Effects of online palliative care training on knowledge, attitude and satisfaction of primary care physicians. BMC Family Practice, 12(37). doi:10.1186/1471-2296-12-37.
  • H555h 5 months ago
    Give more incentives monitory and otherwise to entice healthcare workers
  • fernandlily 5 months ago
    Funding, funding, funding...trained professionals to provide quality palliative care...beyond just MDs and Nurses. We need social workers, pharmacists, occupational therapists, dieticians, physical therapists, chaplains, psychologists, recreation therapists, respiratory therapists. Holistic care requires holistic teams regardless of the population.
  • Mexico 5 months ago
    More education to all parties involved in medical care is needed so everyone is aware of the palliative options available in your community. Recently we were able to access hospice care for our son who was diagnosed with inoperable lung cancer. He also had a number of other issues including mental health challenges and learning disabilities. He spent the last 3 months of his life in hospice and that time was a complete gift to us, as well as him. He was treated with respect, kindness and compassion. The staff responded quickly to any medical issues and made his life more comfortable.But, if we had not been knowledgeable about hospice care beforehand, it might not have been offered. The first response might have been a return to his former living arrangement or perhaps long term care.
  • palliumcanada 5 months ago
    Pallium Canada agrees that palliative care should be accessible to all, regardless of their health, socioeconomic status, language and geographical location. In our experience, education, community engagement, and collaboration are required to successfully raise awareness and access. This includes training of front-line health care workers, social workers, and first responders about how to deliver an early palliative care approach appropriate to their setting and increasing their awareness of the broader services and community supports that are available. At the same time, we need communities and community organizations engaged to build and provide supportive services, raise awareness and create connectivity back to the health care system. Pallium is doing its part by working to adapt its LEAP courses and products to better meet the needs of vulnerable or under serviced populations. For example, we are working collaboratively with Indigenous communities to integrate Indigenous perspectives into existing courses; we are building strategic partnerships to better support French Language Minority Communities; we are working with partners to develop a LEAP Equity that addresses the needs of homeless and other disenfranchised or vulnerable persons; and we are working nationally to facilitate the growth of Compassionate Communities across the country, which includes a focus palliative care for the homeless and imprisoned. All of these efforts could be accelerated and expanded with stronger support and investment.
  • Katherine 5 months ago
    The needs of Indigenous people at the end of their lives are particularly great, and little if any palliative care is available to them. This is a national shame, as is Canada's treatment of Indigenous people since first contact. The time for talking is over - the time for action is now.
  • Emelle 6 months ago
    Many people living in long term care (LTC) homes are marginalized from receiving palliative care because many LTC homes have not integrated a palliative approach into their day to day care, and they have not formalized a palliative care program that can offer an enhanced layer of care are at the end of life. Long term care is a unique end of life setting. It is not a hospital and it is not a hospice. LTC is intended to be a HOME (not a medical environment), where the focus of care is restorative and providing quality of life on a day to day basis. Generally, people have progressive chronic illness but are not admitted with palliation as their care focus (as is the case in hospice). The LTC philosophy is based on a social rather than medical model, with most of the staff being personal support workers, not registered medical professionals. That makes LTC a distinctly different setting for palliative care than a hospice unit where the focus (criteria) is the managing and supporting the dying experience. The goal in LTC is to allow their residents to "die at home" in their familiar surroundings, cared for by familiar people (staff) and with their family at the bedside. This experience would be similar to dying at home in the community. To accomplish home death in LTC, staff and families need education and support. Procedures in the LTC homes are needed for early identification of residents who are transitioning to palliative goals of care. Excellent ongoing assessment is required to provide pain and symptom management. Social support, including support for anticipatory grief, needs to be provided to residents, families and staff. While medical support is essential for good palliative care, 3/4 of palliative care is psychosocial (psychological, social, spiritual, cultural). Bereavement care is needed for residents, families and staff. There are two research teams that have been working in Ontario to develop palliative care program models specific for LTC homes. The first was Quality Palliative Care in Long Term Care Alliance (QPC-LTC), led by Dr Mary Lou Kelley. The second was Strengthening a Palliative Approach in Long Term Care (SPA) led by Drs. Sharon Kaasalainen and Tamara Sussman. See www.palliativealliance.ca for the QPC-LTC framework for a palliative care program and toolkit for implementation. See www.chpca.ca for SPA tools and resources (search long term care)
    Hide replies (4)
    • Visionary2018 5 months ago
      Totally agree that the national palliative care strategy must include a palliative care plan for every resident who enters a LTC. Those with changing health needs enter and often chose to die in this LTC; their "home". All LTC staff need to be trained in palliative care.
      • Maureen 5 months ago
        Absolutely! Palliative training in all LTC facilities is a must! Even if one nurse is trained the knowledge will flow to other staff. There are still facilities where the don’t keep morphine on hand!! This is why an RN must be on duty in these facilities... and palliative guidelines must be incorporated.
        • alliedhealthworker 5 months ago
          Totally agree. I see LTCs as having lots of opportunities for promoting quality palliative care through advance care planning. There are some natural times to start conversations related to planning and "what may come" - e.g., on admission, maybe routine/annual family meetings, any time someone is being considered for transfer to ER, etc. Our facility attempts to start conversations early and "plant seeds" but still have a ways to go with respect to adopting a true palliative approach to care early in the disease process.
    • Katherine 5 months ago
      I completely agree. There should not be a need to "transfer" a person from a long term care home to the hospital in order to die there. Palliative care needs to be available to every Canadian, wherever they may call home.
  • Cmcallister 5 months ago
    The current approach is for more family mds to provide primary palliative care. GPS are currently stretched beyond their capacity. This approach will only work if their work loads are adjusted to take 2 hours to do a home visit for their home bound patients. There should be clear guidelines like there are for orthopaedics and cancer about wait times to effective palliative care when patients have a PPS of 50%. This would allow referral and consultation structures to be put into place and measured....just as long as we don’t spend all of our health care dollars on the measurements so that there are insufficient health care providers to deliver the care.
  • CanadianVirtualHospice 6 months ago
    Expanding and improving access to palliative care information, tools, and supports tailored to the needs of all Canadians is a priority for the Canadian Virtual Hospice (http://VirtualHospice.ca). By aggregating content on palliative care and grief online we are improving the ability of people in rural and remote communities 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. http://LivingMyCulture.ca shares the stories of Indigenous people, immigrants and refugees from 11 cultures. The video series empowers and supports patients and their families to access and advocate for culturally-inclusive care, and navigate issues and the health system. Clips are available in 11 different languages. http://VirtualHospice.ca features a collection of videos and articles about children and teens. Our video gallery includes 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. We also highlight on our site the work of organizations that have developed extraordinary resources such as the First Nations University’s Completing the Circle series, PEACH – Palliative Education and Care for the Homeless project, the Newfoundland Deaf Community’s Palliative Care Guide for the Deaf Community video series, Simon Fraser University’s LGBT videos on aging and the end of life and more. We are planning to fill more gaps in the coming months and years.
    Hide replies (3)
    • DRED 6 months ago
      Sounds like great work and very much in line with what I think is needed.
    • Maureen 5 months ago
      This is great information . It needs to be made more public. I think that somehow we need to have a a way of getting dr’s and nurses being required to read or update on this information yearly!
    • Ashley.Turner 5 months ago
      Absolutely agreed! It's vital that Indigenous perspectives on death and dying are consistently and respectfully engaged. This is such a vulnerable time for any individual/family/community but adding the layer of vulnerability associated with colonization it can really add unnecessary layers of trauma and grief.
  • Emelle 6 months ago
    The "Improving End of Life Care in First Nations communities" project was a Lakehead University-based research team that partnered with four First Nation communities to create local, culturally appropriate palliative care programs. The learning and promising practices generated through the research (2010-2016) were assembled into a workbook that is available online at no charge. The focus is on building the local program on local assets and resources and engaging health services to enhance their program where needed. The outcome was better palliative care at home and fewer days in hospital at the end of life. Visit www.eolfn.lakeheadu.ca to view the workbook and resources.
    Hide replies (2)
    • valeighgirl 6 months ago
      Thank you for this resource!
    • Maureen 5 months ago
      Palliative training for medical staff already working with First Nations population, and insuring that First Nations traditions for end of Life are incorporated .... that is essential! Education... education Education!
  • MooseDragon 5 months ago
    Hotline with navigators to connect to local services. Self-referral a possibility; currently in many places, physicians must receive a referral from another physician and this creates a barrier.
  • Apollo Alias 6 months ago
    Let the patient choose anyone they consider qualified to be paid for providing care and housing.
  • Richmond patient 6 months ago
    Build more special care homes for the palliative care service. Partner with some charitable foundations to build this kind of project.
  • alliedhealthworker 6 months ago
    Collaborating with organizations that already do work with special populations as a means of leveraging existing credibility and ensuring early identification (e.g., palliative training for those providing routine care to special populations to ensure they know how/when to refer).
  • Emelle 6 months ago
    First Nations people and other cultural communities in Canada have long standing cultural traditions for supporting one another and caring for people who are seriously ill and dying. This cultural traditions do not normally include hospital care, formalized palliative care programs, although they would benefit by excellent pain and symptom management. Partnerships between cultural communities and palliative care services are needed to see how our formal system can support cultural communities to care for their loved ones. This is in contract to cultural communities needing to adapt to services that are not culturally appropriate. The concept of cultural humility is becoming prevalent in the literature (as opposed to cultural competence which suggests HCP can be experts on other cultures). Cultural humility challenges HCP to self reflect, listen and respond to the needs of the patients of other cultures. Implementing an approach such as described involves community engagement and community capacity development among diverse communities. It also takes time and skilled facilitators who can navigate between cultural communities and the health system. Doing more of the same will not make palliative care more accessible to First Nations and other cultural groups.
  • jo 6 months ago
    Ensuring outreach through social agency workers; ensuring a protocol is in place in Hospitals and Clinics to provide information to special populations; Higher visibility through public advisory notices on TV, radio, internet in simple language with easily accessible contact info (phone number, web address).
  • David 6 months ago
    Previous commenters have mentioned the available online resources. But if their availablity is not well known among medical professionals and the special populations themselves, they will be underused. It seems awareness campaigns targeted at the medical profession and the general public are needed to improve knowledge. Canadian Virtual Hospice, as mentioned below, is undoubtedly a wonderful resource, but this is the first I've heard of it. Granted, I'm not currently in the situation where their services are needed. But...what if that day comes tomorrow, a month from now, a year from now? If I'm not aware of the service...if my doctor is not aware of it, how can I take advantage of it? We've seen many effective health-oriented media campaigns...and one may very well be effective in this situation.
  • cam 6 months ago
    There are many online resources available as previously mentioned, through Canadian Virtual Hospice, which provides education and support. These online resources need to be brought to the attention of health care clinics, nurses, physicians, community support workers, etc,
  • Tsawwassen 6 months ago
    Make sure that health care workers treating these ill patients are sensitive to their possible needs and have the appropriate materials and people to explain and provide options to them.
  • Pall-life 6 months ago
    I am very pleased that a section for special populations has been added. In many ways I am repeating a previous contribution in another discussion. I want to ensure that when palliative care is being advocated for as both a philosophy of practice as well as the practice itself that members of the disabled community are included. Accepting that being "differently abled" can include a diversity of lived experiences from mobility challenges, communication challenges and/or varying levels of cognitive ability their voices need to be heard. In another context where care decisions were being reviewed, I cannot forget members of the disabled community reminding us, "if you are not at the table you are on the menu." Hence my desire to proactively be inclusive rather than retrospectively. A key lesson from my work is that "being non-verbal does not make the person incapable." Consequently it is very important to learn about and use all means available to bridge communication barriers. By having a willingness to learn about and use communication methods to bridge barriers we promote the dignity and worth of the person through maximizing their ability to participate in care. If mobility is a challenge I think we need to consider using visual and audio communications technology to facilitate assessments and treatment planning. This can be done from the person's home as already practiced in some settings. Unfortunately the use of such technology may be restricted to areas where there is access to reliable internet. In Ontario we have learned that rurality (degree of ruralness) can be a barrier to care. Consequently there has to be some flexibility re who provides care while striving to maintain standards of practice. Thanks for considering my thoughts.