IE10 and below are not supported.

Contact us for any help on browser support

Discussion 3: Person and Family-Centred Care

6 months ago
CLOSED: This discussion has concluded.

Health care teams try to balance technical knowledge and information related to complex diseases and treatment plans, with the personal desires, cultural values and beliefs of the person receiving care and their family.

Is person-centred care an appropriate goal? Why or why not? What barriers exist to prevent delivery of person-centred care?


This consultation is now closed.


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

  • care2end over 1 year ago
    Person and family-centered care is very appropriate. In palliative care, it is commonly recognized that the patient and family are the unit of care. Often it is said, “Nothing done to be without me.” Person centered care is necessary to align with a person’s value and beliefs. By so doing, not only is the person’s opinion respected, but their dignity is maintained. Unwanted overly aggressive care is avoided. Quality of care is improved and often the cost of care is reduced by less wasted care. Person and family-centered care improves patient and family experience. Person and family centered care improves health care provider experience through improved relationships and patient and family satisfaction. Overall, person and family centered care fulfills the Institute of Healthcare Improvement’s quadruple aim.There are many barriers to providing person and family centered care, chief being a task oriented/problem focused culture of care. Insufficient priority and time is provided for serious illness conversations and goals of care discussions. Many patients do not know there prognosis or where they are on their disease trajectory. This can be due to lack of experience or competence of the health care provider in prognostication and lack of comfort in having difficult conversations. Often when these conversations do occur, they are not communicated to the rest of the care team or documented so that everyone; patient, family and all of the members of the care team are on the same page. Being on the same page is extremely important for person and family centered care because of the lack of continuity of care providers. A common complaint is that a patient/family are always dealing with someone new who does not know their story and having to repeat their story over and over again. Worse yet is if the patient receives different prognoses or different opinions about best plan of care because of lack of communication. Unfortunately this happens all too often. Not so far mentioned is a standardized way of assessing person and family distress. Not often are point of care patient reported outcome measures (PROMs) and patient and family reported experience measures (PREMs) utilized for screening for physical, psychosocial and spiritual distress and used for more in depth focused person and family centered communication and care giver responses. An underlying barrier is lack of capacity, either time or funding, to supply the necessary and timely supports for patient and family-centered care. Hopefully a National Framework for Palliative Care will address these issues.
  • Pallfan2018 over 1 year ago
    In Alberta, one of the key foundations of our system is specifically identified as Person Centred Care. Not to therefore subscribe to the philosophy/goal is not an option in AHS. The entire structure of our ACP-GCD (Advance Care Planning Goals of Care Designation) program is based on the premise of attempting to have patients identify their goals and desires for future care, and to then use that in decision-making around whatever is done going forward. Where it happens, the intent appears to be being met; it is not yet universally in place however for reasons noted in another response.
  • CFHI_FCASS over 1 year ago
    Person-centred approaches to care deliver care that is personalized according to the expressed preferences of patients and families, engaging an interprofessional team and families to design and implement individualized care plans. Person-centred care is therefore an appropriate goal in a palliative care context. CFHI has considerable experience spreading and scaling person-centred approaches to care that span the continuum of care – including a hospital-to-home outreach model for patients with chronic diseases like advanced COPD and the resident-centred approaches to dementia care in long term care homes. The INSPIRED COPD Outreach Program™ provides patient- and family-centred care and support across care transitions for those living with advanced COPD, improving the quality of life and experience of living for both patients and families while decreasing unnecessary emergency room visits and hospital readmissions. The program – which CFHI is scaling up across six health systems (https://www.cfhi-fcass.ca/WhatWeDo/inspired-approaches-to-copd-scale) – includes a detailed plan based on patient-driven goals of care, including an individualized “action plan” to deal with crisis symptoms in the home. Advance care planning takes place in the home and is co-created between patient, family and spiritual care provider (or social worker or other Advance Care Planning Facilitator).Through several waves of initiatives focusing on the appropriate use of antipsychotics – including several CFHI collaboratives (https://www.cfhi-fcass.ca/WhatWeDo/appropriate-use-of-antipsychotics) – long term care homes have demonstrated that despite significant resource challenges, large scale implementation of person-centred approaches to care is possible, can be sustained, improves the quality of care for resident and improves family and staff satisfaction. Person- centred approaches to care not only support better care planning discussions and but they also make it more likely that patient wishes for their care will be respected. There are transferable lessons from the successes in long term care that may be helpful to other sectors in the health system.
  • cnh920 over 1 year ago
    Person-centred care is essential for securing freedom of choice, dignity, and relevant care that is not imposed but adapted to what the person values, desires, and needs. However, I would offer a revision to the model that takes a more ecological view. The principles of person-centred care often emphasize that care is multi-dimensional--physical, social, spiritual, emotional, etc.--but is stuck in two limitations that are both practical and cultural. The first is that it demands health professionals to perform "whole-person care," to be responsible for the totality of issues that cause and originate from their need for care. I praise without condition the demand on HCPs to treat their patients as people with complex lives and purposes beyond a particular disease and its treatment. What I find problematic is the claim, and the arrogance behind it, that HCPs can take on all of those issues and apply medical intervention to solve them. Health care needs humility as much as wholism in its approach to caring for people. Health care can aid in many things, but it must admit the shortness of its reach and, instead of sit quietly in helplessness, build stronger collaborations outside itself. That includes stronger connections to other professional services in the realms of social, legal, spiritual, cultural, and financial support, but also to re-engage the community around the person to participate in their care. The 'compassionate communities' approach reflects this, insofar as it does not call for more health care specialists to address each domain of a person's life, but rather to build community capacity to help in the areas that health care can't or doesn't need to spearhead. The second limitation is that of the centricity of the individual. Many of the concerns and fears people have about dying have to do with the impact it will have on the people around them. There is also a major social dimension to their suffering, to their values/beliefs, and to their care (e.g., from the patient-provider dynamic to the essential help of family/friend caregivers to the highly relational emotions of grief, helplessness, embarrassment, anxiety, etc.). That is, what is central to the person is often outside of themselves, in the relationships they are a part of. Person-centred care can't just be about the person; tying back to the first limitation, the presence and participation of their social networks is a major factor in their experience of dying and in what they might define as good palliative care and a good death. An ecological model of a person places their social existence on a much higher plane than is currently represented in models of person-centred care, even if sometimes called person-and-family-centred care. This becomes even more relevant among cultural communities in which decision-making is done not by the individual themselves but together within a social collective or another authority. Canada's a multicultural country and needs multicultural thinking about how it cares for its citizens. That can't be attained by strictly attending to the individual or 'centring on the person'. It also can't be done by health care alone, or professionals alone; only collaboration between them can properly address the multiple points and facets of the person.
  • OPSWASylvia over 1 year ago
    Person-centred care is so important. It focuses on the person as a whole, mind, body, spirit. It's what encompasses us as individuals and makes us unique as no two people are alike. It pulls the healthcare team, family and patient together to develop and deliver a care plan customized to a palliative individual. Person-centred care allows for professionalism, expertise, ideas and communication across the spectrum of care. Communication barriers sometimes exist to prevent delivery of person-centred care because information and resources may be miscommunicated, misinterpreted and biased based on one's values and beliefs.
  • yinyang over 1 year ago
    Cet objectif nous apparaît fondamental... il se retrouve d'ailleurs au coeur de la vision sur laquelle s'appuie le Plan de développement 2015-2020 des SPFV du Québec... plus précisément, et à cet effet, trois valeurs fondamentales doivent guider l'ensemble des services offerts : 1) le respect de la valeur intrinsèque de chaque personne comme individu unique, le respect de sa dignité, ainsi que la reconnaissance de la valeur de la vie et du caractère inéluctable de la mort; 2) la participation de la personne à toute prise de décision la concernant; à cette fin, toute décision devra recevoir le consentement libre et éclairé de la personne et se faire dans le respect de son autonomie. Selon sa volonté, elle est informée de tout ce qui la concerne, y compris de son état véritable et du respect qui sera accordé à ses choix; 3) le droit à des services empreints de compassion de la part du personnel soignant, qui soient respectueux des valeurs conférant un sens à l'existence de la personne et qui tiennent compte de sa culture, de ses croyances et de ses pratiques religieuses, sans oublier celles de ses proches.
  • rhetoric_ally over 1 year ago
    Person-Centered Care should always be the goal in any health interaction with a medical professional, and especially where Palliative Services are concerned. There is nothing more intimate nor unique than death, and everyone will have a different desire as to how that manifests. The medical team knows medicine, the patient knows themselves. Each bring knowledge and experience to the table in their individual capacities. To dismiss a patient's voice simply because they aren't on the medical side of the table, especially when dealing with a life-limiting diagnosis, does a disservice to all involved. Barriers can include lack of education, understanding and the perpetuation of fear and stigma, lack of funding, and lack of site supports.
  • Heron63 over 1 year ago
    Person centred care is a very appropriate goal - we still tend to focus on what we, the health system, believes is best, or what is resourced. Holistic care including true interdisciplinary teams could be more cost effective than current models.
  • KM_2018 over 1 year ago
    Person centered care is and should be the only approach to palliative care. End of life decisions are so specific and will differ with different people and in different situations. "You only get one death", and any wishes you have surrounding that (as long as they are legal) should be respected. The barriers to this are again, education. There are so many difficult conversations that need to be have during this time and most people are not comfortable with this. We have to change the mindset and normalize this. Education for health care professionals is a must. They need to know the best ways to approach these conversations and how to remove their own personal bias so they can listen and hear their patient. Education to the general public is also a must. We have to do public campaigns to change the mindset. Have people understand the terms and the benefits of advance care planning and palliative care. Patients need to know their options and be able to make decisions based on their wants and beliefs and not to be influenced by family and friends. This process will be hard. It is never easy to come to terms with mortality, whether it is your own, or family. But we should be working to make it easier, and less stressful. And we have to involve the patient, and have these discussions early on to make that happen.
  • cklondon over 1 year ago
    I agree with all of the comments to date, that person-centered care is the goal. However, funding streams do not always support that and either do metrics - someone may need a hospice bed or a palliative outreach team involvement but there may not be one available or they may not meet the criteria. Hospitals, Long Term Care and Retirement Homes also do not often get any or very little specific funding or support for a palliative response to the individual needs of patients/residents. If we want to give more than lip service to this 'person-centered care' model we have a long way to go - including cultural competency and support; training of health care providers and institutions and also the health care system funding models to be able to support TRUE person-centered care.
  • PallRNKaren over 1 year ago
    Yes!! person-centered care is an absolute appropriate goal. The barriers are: language, differences in goals and treatment planning and the inter disciplinary team having difficult conversations.
  • livermore over 1 year ago
    Yes, it should be the goal. However, there are many barriers to this - family members may differ on goals and it is difficult to have these conversations
    Hide reply (1)
    • yvrpcm over 1 year ago
      If the patient is able to articulate their wishes then the family members are irrelevant. The patient should be allowed to discuss their ACP, wishes etc without the family present. Difficulty arises if there is more than on SDM or the SDM is being pressured. But if they are an SDM chosen by the patient, they should be listened to without influence from others.
  • Ette over 1 year ago
    It is a appropriate goal, absolutely. Each person has different values, and beliefs. What one desires for end of life care will be different for the next one.A barrier is the health care providers understanding their own bias towards end of life care. They might not listen or even ask the patient what he wants.Other barriers, are lack of education and understanding that people can speak about what type of treatment, care they want.Also, many people are not comfortable having this conversation to someone who is terminally ill.
  • Kjpt11 over 1 year ago
    Person-centred care is appropriate in all healthcare but especially in palliative care. Challenges are usually related to disagreement amongst the person's social network and well as resources available within the social network and also the formal network. Also, there are challenges with some primary health care provider comfort level around EoL discussions.
  • JenniferM over 1 year ago
    Person centered care should be an appropriate goals, as well as family centered care (keeping in mind the changes in what family means). The barrier may be that people think that this would be not efficient. I would beg to differ, that there would be less use of care and more effective use of care if people receive good quality care instead of using depersonalized care.
  • melmay over 1 year ago
    It absolutely is an appropriate goal. Palliative care is person centered. It is diverse and different in every situation. That is why we as palliative care professionals must recognize the fluidity of the patient/program and be adaptable to this. Practicing palliative care can be different for some if they think everything must be a cookie cutter approach. definitely not the case with palliative care and we need to be aware of this to be able to offer the best care.Cultural differences, rural vs urban, age, all the social determinants of health affect a persons perspective on care and we must recognize this.
  • kott over 1 year ago
    In Canada most of the care is provider driven and provider convenience based and that need to change to patient convenience based.
  • DrDarkwingD over 1 year ago
    Person-centred care is an appropriate goal. But we need to change the current funding/work-flow model of primary care to make it an achievable goal. Doctors with empathy or take extra-time with patients do not get compensated more than doctors who churn through patients.
  • Sunrise over 1 year ago
    It is in the sense that presenting people with the health care options (and risks and benefits) and them making the choice of what they want makes perfect sense. Explaining why some things aren't options is important as well (for example surgery). We aren't meant to agree with all choices, we are meant to support them in their choices and supporting families if they don't agree with the patient's choices.
  • palliumcanada over 1 year ago
    We believe that person-centered care is critical. Pallium understands that the quality of life of patients encompasses the physical, psychological, spiritual and social domains. For that reason, all the LEAP courses include integrating these domains in everyday care. The WHO definition of palliative care identifies “an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness”. Achieving this goal of improved quality of life, respecting advance care plans, and supporting families requires a person-centered approach to palliative care. Person- or patient-centred care is and has always been at the core of what palliative care is all about. By definition, person-centredness is a key component of palliative care. In fact, palliative care has been, is, and will continue to be, an important vehicle to promote patient- or person-centredness in health care in general. For example, in undergraduate and postgraduate education, palliative care provides a platform to promote person-centeredness and compassion alongside competency and teamwork in health care in general.
  • jcruikshank over 1 year ago
    Person-centered care is an essential part of all heathcare delivery, including and especially palliative care. Delivering care that is culturally appropriate and sensitive to the social, spiritual, and psychological needs of patients at the end of life is essential for all Canadians to access a ‘good death’. Barriers include lack of support and information for caregivers, particularly financial support for family caregivers who may be responsible for a loved one whose illness and care are impacting their income. Cultural and emotional literacy are also extremely important for caregivers, and access to information, tools, and educational supports can reduce feelings ofisolation for both caregivers and patients and improve the quality of the care provided.
  • Robin over 1 year ago
    I agree with comments below that person-centered care is not only an appropriate goal but is essential to quality palliative care. I also agree that spiritual care is an essential element of person-centred care but is often forgotten. I believe there should be dedicate healthcare providers to coordinate care and have regular ACP/goals of care discussions with people and their families. This would ensure healthcare and end-of-life wishes as well cultural values and beliefs are understood and respected. These are ongoing conversations that require time and a dedicated, consistent person such as a case manager/health navigator who could call on other expert team members when needed. This is one way to reach the goal of person-centred care.
  • veejay over 1 year ago
    person-centred care is essential! We measure the efficacy of our patient-centred care via Quality of Death AGPAR to understand if family felt their loved one had a "good death". This maybe a way to measure successful outcomes in palliative care that is centred in being patient-centred. the following are barriers to delivering patient-centred care for those who wish to spend EOL at home and or in a hospice/PCU: lack of hospice dedicated beds in Scarborough for long-term or respite care; lack of visiting palliative care physicians in the community for palliative care; lack of language specific services for a diverse community; lack of homecare hours to assist caregivers with care of family member at home, esp. overnight.
  • Pall-life over 1 year ago
    Please ensure that spiritual care is part to the person and family-centred care. Too often spiritual care providers are the first services cut in institutions, yet spiritual health is a significant part of total health.
  • alliedhealthworker over 1 year ago
    Person-centred care is a VERY appropriate goal. In some ways, I think it's the only goal (or at least main goal) in palliative care. I see there being barriers related to workload pressures and clinicians not taking enough time. I also wonder if increasing opportunity for reflective practice or communication skills training may be of benefit, as often barriers related to connecting with an individual are less about what is said and more about how it is said.
  • NurseDar over 1 year ago
    In addition to my earlier comment. The goals of care need to be revisited, revised, reframed as changes take place. This is not a one time discussion. TIME is needed to continue the discussion at each and every visit. Most patients and families do NOT know what to expect and our expert guidance is needed to help them establish what may be good options for individualized plans of care.
  • NurseDar over 1 year ago
    Person-centered care is of prime importance in delivering excellent palliative care. Care can become very complex and the patient and family need to be able to manage and deal with a treatment plan that is acceptable to the patient.There are many compromises that can be made to help people achieve their goals of care but only in being person-centred can we achieve this. Barriers to care could be many different things from not having appropriate services available, not enabling a patient and family to express their goals and desires, not giving the health care team enough time to recognize person-centred care as an important part of the treatment plan.