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Discussion 2: Facilitators and Barriers

10 months ago
CLOSED: This discussion has concluded.

What could facilitate the integration of palliative care into the care you provide?  What are the barriers?

This consultation is now closed.


  • care2end over 1 year ago
    One important missing piece that would facilitate timely access to a palliative approach to care is public education. This could be facilitated by including a public health approach to palliative care so that individuals and care providers recognize who would benefit from a palliative approach to care, what those benefits are, and how to access palliative care in a timely way. The misconceptions and myths of palliative care need to be dispelled and the stigma of palliative care overcome. To not create confusion and increased stigma, palliative care needs to be defined as it has been in the WHO definition to improve the quality of living for those facing life threatening illness and that it does not intend to hasten or prolong death. Integration of palliative care into the care I provide will be facilitated by defining the provision of medically hastened death (MAiD) as separate from palliative care. Another important facilitator would be targeted funding for palliative care services at home, including: sufficient home care nurses not to have a waiting list for care, temporary 24/7 shift nursing care available for crises that may come up at home or for last hours or days, sufficient home support workers and allied health workers to be able to provide continuity of patient and family care, and sufficient home care nurses, social workers/spiritual care providers/PT/OT for back fill when colleagues are away or ill. Ideally, palliative focused home nurses should be available to provide care. There should be no barrier from a financial perspective for family physicians to leave their offices to provide home and community primary palliative care services. If not available in every province, there should be time based fee codes for home and community palliative care (Despite much advocacy, these fee codes are still not available in British Columbia). Targeted funding should be available for palliative care research and quality improvement initiatives. To know whether a change is an improvement, it is also necessary to have standardized palliative care metrics and benchmarks. In our region, current barriers to providing a palliative approach to care are insufficient capacity in home and community care, inequitable pay scales, lack of recognition of who will benefit from a palliative approach to care, late referrals to palliative care, family physicians who no longer do home visits (some will not even prescribe opioids), inconsistent involvement of a team approach to care, and lack of comfort or competence of many care providers who have not received education or training in serious illness conversations, pain and symptom management, and a palliative approach to care.
  • Pallfan2018 over 1 year ago
    One of the biggest barriers is the perception that "oh no, palliative care means I am dying". The understanding of the Palliative Approach is limited in the public perception. Rather than understanding that palliative care encompasses a number of services and supports, with different types of supports required at different stages along the journey, people think of palliative care as being end of life care. Better education around what palliative care is and does, and not just end of life care, would be useful.
  • CFHI_FCASS over 1 year ago
    Access barriers to palliative care take many forms including:• diagnosis (malignant versus non-malignant disease)• geography (differences in rural versus urban access to services)• primary care provider knowledge (knowledge of palliative care interventions and available resources)• Culture (access to culturally competent care)• language• systems of care that are planned without formal consideration for palliative care service capacity requirements • true service gaps (such as regions where there are no palliative care specialists or community services)Additionally, patients and families may not understand what palliative care services are and how they might provide benefit, including how MAiD as an end-of-life care option, is different from palliative care. While CFHI is not a direct service provider, our experience has shown that there are many examples of innovative approaches to care that can facilitate improved access to palliative care services. For example: • connected medicine models (e.g. eConsult) • telepalliative home care solutions (remote symptom monitoring, and phone and video links with providers) • shared care models • caring communities models (e.g. peer supports for the vulnerably housed) • culturally competent and safe models developed with Indigenous communities (e.g. Lakehead University projects and toolkits)• perinatal hospice models (e.g. Roger Nielson House in Ottawa) • tools that help providers in acute care to better identify seriously ill patients with potentially unmet palliative care needs (e.g. mHOMR tool from University Health Network and Mount Sinai Hospital) CFHI has expertise in supporting service provider organizations to adapt innovative practices to their local context so that they can adopt and then scale change. In our experience, there can be policy and/or regulatory barriers that need to be addressed when scaling an approach that provides integrated palliative care. Nevertheless, there is a significant opportunity to improve access to palliative care for Canadians by using improvement methodologies to support healthcare professionals and organizations to implement these more integrated approaches to palliative care.
  • cnh920 over 1 year ago
    Major facilitators include early training about the palliative approach (i.e., in universities and post-graduate professional development) and a two-way street of support between admin and on-the-ground staff, the former to create a culture that normalizes and encourages pall care, and the latter to help inform policies that they can implement in their work. More generally speaking, a big facilitator goes beyond the organization, that is, to normalize pall care in the communities it serves. Community-based education, support, and care will help break down the barriers of reluctance and hesitation coming from patients and their families. If it's treated as just a (specialist) health care service, rather than a principle or approach to care that can be exercised by professionals and non-professionals, neither the community nor the bulk of the health care professions will see it as something they have a role in.
  • yinyang over 1 year ago
    Il semble plus facile d'établir à quel moment, nombre de semaines, on peut parler de soins de fin de vie.... il est par contre beaucoup plus difficile de définir à partir de quand on peut parler de soins palliatifs plus en amont versus ce qui est requis comme dispensation de bons services au bon moment dans toute trajectoire de soins... malgré cette difficulté apparaît essentielle l'introduction d'un "marqueur" en lien avec l'identification des personnes susceptibles de bénéficier des SPFV en vue de l'évaluation globale de leurs besoins et la formation du plus grand nombre possible d'intervenants de première ligne à l'approche palliative intégrée.
  • arcticfox over 1 year ago
    One of the barriers within my agency is staff fear and stigma around having difficult and serious illness conversations. Many feel that because they do not have the ability to speak confidently about the illness trajectories, they shouldn't be embarking on any part of the conversation. Another challenge is culture, and comfort working with persons outside their culture. In particular with palliative care, there is a fear of offending or upsetting someone who may be of a different culture. Staff need to be more empowered with meaningful conversation and engagement skills.
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    • YYCdoctor over 1 year ago
      The Serious illness care program (from Ariadne labs) is a very effective way to empower and equip staff with the competencies they need to have high quality conversations and document them. Part of what we need now in Canada is the ability to scale up implementation of this intervention with funded train-the-trainer programs, mentoring post-training and the support of local champions who cue staff to help them prioritize taking the time for this critical communication.
  • rhetoric_ally over 1 year ago
    Education on what Palliative Services actually are, what their goals are, and what they provide to both the patient and the Medical Team. Disseminating myths and the perception of 'Giving up' that seems to arise when Palliative Services is discussed or requested needs to happen, otherwise these barriers will continue to impede timely and needed engagement with the Palliative Team and their expertise and skills. Breaking down the stigma and fears surrounding the perception of this department.
  • KM_2018 over 1 year ago
    Barriers for us are geography (NL). Most of the specialized palliative care teams are in the larger centers, which is not helpful for our large rural population. If we could train more health care professionals (RNs, LPNs, CHNs, NP, and family Dr) with LEAP training, and have them more comfortable with approaching palliative care, and taking that on, I do believe this would help. Resources are key as well. If we could have more NPs specifically trained in palliative care to help the rural populations, that would be a huge help. Involving other disciplines such as RTT, and social workers when it comes to designing and building palliative care programs and approaches are ways to help as well. Look at the professional scope and see what they are capable of? If we work as a team and put the patient first we can achieve so much more.
  • PallRNKaren over 1 year ago
    Early referral from specialists, increased community nurses, increased educationBarriers are nursing wages, Doctors/Specialists reluctance to refer to "palliative" care, education available to all levels of the interdisciplinary team
  • OPSWASylvia over 1 year ago
    For PSWs, integration of palliative care into the care provided could be facilitated by education and essential skill sets in order to provide the best quality of care in whatever environment the situation presents itself. Barriers, as already mentioned, can be geographical location to where the client lives. Resources that are integrated to better help all concerned would be key to facilitate better communication to implement a plan of care.
  • Ette over 1 year ago
    The barrier is being a rural, long term care facility with no integration of palliative care.Having a designated Palliative Care team, serving a group of rural, long term care facilities would work.
  • Kjpt11 over 1 year ago
    Barriers for us are usually due to lack of resources due to the rural nature of our province (NB). Most specialized palliative resources are located in larger communities.
  • gylemcf over 1 year ago
    Integration of palliative care providers (primary and specialist palliative physicians, nurse clinicians, social work, spiritual care, etc) into chronic disease clinics (CHF, COPD, diabetes, ALS, stroke clinic, early dementia, Parkinson's, etc) would allow for easier access for patients, more consultation opportunities for primary care providers, and earlier integration of palliative care discussions beyond cancer.
  • JenniferM over 1 year ago
    Required integrated palliative team meetings. Working with a palliative team can increase quality of care, reduce miscommunication between care providers and make all who are on the team feel heard by other members. Barriers would be lack of training on the benefits of integrated teams and not including all team members (maybe not seeing certain people on the team as important)
  • piglet over 1 year ago
    I have some experience in nursing homes where patients with advanced dementia are cared for. These settings are almost devoid of any structured palliative care services. Families concerns are eclipsed with the day to day gaps in this sort of care, trying to make up for lack of stimulation and social interaction, infrequent bathing, low quality food services, and are unable to even think about asking questions about or agitating for adequate palliative care
  • melmay over 1 year ago
    Equal access to qualified, educated palliative care professionals would provide a more integrated approach, i feel. The barriers are lack of these trained professionals offering the same support across our province (NB)
  • Gingerbugnp over 1 year ago
    In the acute setting having access to palliative experts would facilitate care by supporting both physicians and front line staff. In addition, having greater access to community resources would facilitate transitions for patients into the community from hospital and hopefully help to keep patients from returning. In my current setting I find that barriers currently include a lack of knowledge among staff and physicians about palliative care, when it's needed and it's practices, competing priorities within the hospital and a lack of true recognition that providing quality palliative care lends to improving patient and family satisfaction.
  • kott over 1 year ago
    One of the barriers I found that patient is not having a single provider who knows him/her very well rather than explain to different people who come to care for them.
  • kott over 1 year ago
    Patient should be able to access the service when they need it no matter what time of the day. I work Monday to Friday 8-4.30. Not all patients develop their needs during this time. so there should be flexibility as well as on call service provided to the providers
  • DrDarkwingD over 1 year ago
    The majority of palliative care is provided in primary care. However, we do not encourage primary care to provide palliative care. Lack of educational opportunties. Lack of connection with other interdisciplinary team members (i.e. they don't have time to come to visits/debrief/conference with us). Lack of compensation to provide good palliative care. Current funding models (FFS and even capitation/blended cap) for GPs favours in clinic visits with a large patient roster. Not a small patient roster but 24/7 access.
  • snicolson over 1 year ago
    Barriers - Family physicians, surgeons, lack of whole person care. Lack of professionals who have an expertise in palliatve care, $$We definitely could do a better job - continue to educate people. Nursing schools , med schools should be providing improved education on Palliative / EOL care. Physician Order sets especially in a hospital setting for someone who is palliative.
  • Q321@# over 1 year ago
    There is a challenge in having equitable access to palliative care for all Canadians. There is also a perception in our patient population that palliative is only for end-of-life, and we're working to inform patients and their families that this may be a helpful resource to access at various points while leaving with a terminal disease, not just at the end of life.
  • palliumcanada over 1 year ago
    A growing number of reports including the new law, Bill C-14, on Medical Assistance in Dying (MAiD), Quebec Bill 52 on Right to Die legislations, and the recently passed Bill C-277 on Developing a National Framework for Palliative Care, highlight alarming gaps in the availability of palliative care, and call for action. Key to improving access is training more health care providers and carers. If ‘Right to Die’ is to be accessible to every Canadian, then it is imperative that federal and provincial healthcare systems ensure a palliative care approach is accessible to all – providing balance and a full range of options and choices.One of the main barriers we face at Pallium is the fact that not everyone is aware of the benefits of an early palliative care approach. The stigma attached to the words “palliative care” often results in pushback from the family and the patient who could benefit from a palliative care approach. There are also many health providers who are not aware of a palliative approach to care and who believe that palliative care services should be provided only by palliative care “specialists” (i.e., professionals with advanced training and/or experience in this area). Changing the name from “palliative care” to something else will simply perpetuate our avoidance of talking about palliative care and end-of-life care issues.We see education as the critical component to overcome these barriers. This education needs to include a focus on both the general public, with respect to the true meaning and value of palliative care, as well as health care providers regarding how to appropriately and effectively engage in and deliver an early palliative care approach. To support this, Pallium has built a community of over 650 trained and certified palliative care educators, from different clinical and professional backgrounds, who are delivering courses across the country. This represents a major force that can be further galvanized and mobilized to scale-up the work of educating and implementing quality improvement palliative care initiatives across the country. For every Canadian who requires palliative care to receive it early, effectively and compassionately, palliative care education must be provided across the whole learning continuum, from undergraduate (e.g., medical and nursing school), to postgraduate training (e.g., residency training across many different specialty areas) and continuing professional development (CPD) for professionals in practice. The regulatory and accreditation bodies that oversee education in these sectors need to be held accountable to ensure this. This is particularly true in the undergraduate and postgraduate levels. Too often, palliative care training is optional instead of mandatory in medical and nursing schools and almost completely absent in the undergraduate training of other health care professionals.
  • jcruikshank almost 2 years ago
    palliative care as an essential part of all healthcare, and making it more accessible for all Canadians. This includes providing support for bills such as Dan’s Law, which aims to waive the 3-month waiting period to access provincially-funded palliative care services in Ontario, and creating relationships at the federal and provincial levels to advocate for more governmentfunds and attention towards hospice palliative care.The biggest barriers are a lack of funds in the federal and provincial government budgets for hospice palliative care initiatives and caregivers, and a lack of public understanding and wareness of the role hospice palliative care has to play within the wider healthcare landscape. Investment across all settings of care is essential. An increase in the number of hospice beds across the country would also improve access to care.
  • Pall-life almost 2 years ago
    Funding models for hospitals may inhibit creating palliative care units and programs, especially with the push to get alternate level of care (ALC) patients out of hospital ASAP.
  • veejay almost 2 years ago
    SRH Palliative care team needs to meet with our nephrology team to better understand each other's processes and how we can pool resources for patient-centred care. SRH needs to advocate for access to hospice beds in the community since there are currently none in Scarborough. Scarborough also needs access to more palliative care physicians who can do home visits for pts who would benefit from palliative care at home v.s. going to the emergency and taking up an acute bed in the hospital; especially if their wish to is remain at home for their care/EOL care
  • alliedhealthworker almost 2 years ago
    I still see some barriers with respect to understanding of how different lprofessions have roles in palliative/end-of-life care. In some areas of the facility where I work, I hear about referrals being "cancelled" to different professions once someone is labelled "palliative". To me that suggests that providers still conflate the terms "palliative" with "hospice" or "end-of-life". It also suggests that there is either not an understanding of how those consultations could help at end-of-life or perhaps that discharge pressures may be factoring into decision-making (e.g., not consulting for fear it will delay discharge).
  • NurseDar almost 2 years ago
    More of a team approach is needed for ALL the various clinicians involved in a patients care. There is a tendency for the cancer clinic, acute care, community care, physicians (GP and specialists) to act in separate silos. We need to be on the same page and share goals of a patients care. COMMUNICATION is key. Updates to ALL clinicians involved in a patient's care is helpful and allows all involved to be identified and participate in their role on the team.
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    • alliedhealthworker almost 2 years ago
      I totally agree with this statement. I work in an academic teaching hospital and find that the flow through different programs can be frustrating for patients/families due to lack of communication or lack of consistency in understanding/approaches between programs.
  • PallMedDoc almost 2 years ago
    With recognition by the College of Family Physicians of Canada regarding the full roles and responsibilities of a family physician (which includes palliative and end of life care), it's important that all the provincial family medicine chapters and colleges empower and support their family physicians in providing palliative care. This will be great facilitator.Similarly on the specialist side, especially in busy clinical areas, a current barrier is lack of recognition of the palliative specific clinical work provided by their specialists (and the extra time that it needs especially around the nuanced conversations needed regarding prognosis and advance care planning). Working with national specialist organisations to advocate for placing emphasis on palliative care related metrics should help. It would be the same with health system leaders who are in charge of each of those clinical areas (e.g cancer system leaders allowing their oncology clinicians to spend time also focused on ACP and palliative care related conversations and importantly, recognising and valuing that time spent).
  • PallMedDoc almost 2 years ago
    Recognition by health systems that education, mentoring and purposeful program development (to promote the integration of palliative care) are equally valid and important tasks that a health care clinician should do (especially in palliative care), in addition to the equally important task of direct patient care. In a busy clinical environment, it's easy to deprioritise education and program planning.. and instead see patients. Having resources to do both well should be a priority for health systems to fund (and not have to rely on just the universities). This then means that we need more palliative specialist level individuals (in all disciplines including nursing, physician, social work) so that there's enough to do both the clinical work as well as the education/program planning.Another important facilitator is nationally set standards and reporting structures for all Canadian jurisdictions to report regularly on how palliative care programs are structured and palliative care is delivered to their population.