Person Centered Health Care–Some additional defining thoughts with respect to Mosaic’s Presentation at the European Society For Person Centered Health Care’s 4th Annual Conference

Certainly, for us, looking more deeply at person centered care has allowed us to look beyond standard models of care, and their assessment processes, to areas that may also have impact with respect to the client’s physical and mental well being to greater extent; addressing typically “non care” areas, for older adults where complex care needs impact being, may well be of critical importance to the person in raising the quality of life otherwise achieved from outcomes limited to nursing and personal supports.

Should putting the person first and foremost at the heart of interactions involving personal support, nursing and medical care decisions be anything but an interaction of central importance to the care relationship?  The recently formed (2014) European Society for Personal Centered Health Care, whose annual conference we will be presenting at this Friday, thinks so and frames its person centered context thus:

The Society is principally interested in the development of models of clinical practice which allow affordable biomedical and technological advances to be delivered to patients, but within a humanistic framework of care that applies science in a manner which respects patients as persons and which takes full account of their values, preferences, narratives, cultural context, fears, worries, anxieties, hopes and aspirations and which thus recognises and responds to their emotional, psychological and spiritual necessities in addition to their physical needs.

Each and every one of us operating in the sphere of care has a responsibility to treat people in need of care and support, with utmost respect for their rights, their person, their personal preferences and wishes and, most importantly, to be sensitive, empathetic, to the physical and mental challenges they may be living with and to see through these issues to the person within.  We believe that this is a very important first step in developing a care based relationship of any order.

As providers of longer term home care service based relationships, that include a great many older adults with complex care needs, we also believe we have a responsibility, as gatekeepers of our specific environ, to address the importance of the person, outside of the typically defined care relationship, as a being rich in meaning, history and creative potential.  The Joseph Rowntree Report “A Better Life: What Older People with High Support Needs Value” provides an important insight into the broader needs of these older adults.  We believe that care has natural higher dimensions and we address this in our “The Meaning of Me®”

Perhaps, for many of those who are in “the chain of care”, whether it be the primary physician, the specialist, the social worker, the physiotherapist, the home care company and their caregivers and staff, it is the very fact that we are aware of the imbalance in the lives of those we care for that we see the need for this greater emphasis on the person.  

It is not just that a person’s best interests should come first, but that the ability to make decisions in their best interests cannot be made without first defining what those interests are.  This is particularly important for those with complex care needs: their vulnerability may place them in a position where their ability to impose their own interests on the decision is impaired.  In this sense there is a risk of a conflict of interest, where the interests governing the direction of the act of care operate under another imperative.  Conflicts of interests are also very real if costs or returns become the major determinant of care and these restrictions are often imposed outside of the specific care assessment interaction.

Gaps In Care

The emphasis on person centeredness also arises from being aware of gaps that risk detracting from a person’s best interests. 

Holistic, when considering the issue of gaps in care, does not just mean knowing the whole when making a decision, but either covering or considering the whole area of needs when addressing care; i.e. this either means referring on, when identified needs fall outside of the specific area of expertise or service, or the existence of a chain of care that will address these wider needs as the person moves through the process. 

As a community focused homecare company we are especially aware of the gaps in care that relate to the person as a being of meaning and as a person existing within a wider community. 

In Canada at least, the home care market place is largely unregulated.  We are concerned that the standards of care and the gaps in care have also encouraged the development of app driven home care intermediation services that likewise omit some key gaps in care.  The new app driven services appear overly focused on the cost dimension and, we fear, risk eliminating the interaction between the person at the centre of care and the care determination process. 

Many of these services we suspect are merely improvements on the basic intermediation model, a model we have distanced ourselves from at outset.  Some of the issues the app driven models address are valid, but the services themselves retain the many gaps we see in care and pose additional risks with respect to holistic care needs.  A fuller discussion of their business models is outside the focus of this blog.  

Gaps in care can range from weak assessment of client needs, a failure to address the need to oversee the caregiver provision of care and to monitor changes in client circumstances, especially those with complex care needs.  Addressing the wider mental health/emotional well being aspects of social and community engagement, outside of task focused nursing and personal support, also risks being overlooked.  Many of these gaps are not necessarily the fault of home care per se, but the cost and funding pressures on the one hand in the industry, the ease of entry into the industry, and the lack of state involvement in developing more holistic guidelines to the provision of care.

Gaps in care as an issue is also a critical area when we look at issues of remoteness in “the chain of care”.

To address the impact of gaps, especially those associated with loss of social interaction and reduced engagement in interests, activities and communities, we may have to be creative. 

But where should focus on the wider environs of the holistic care model be placed?  At the primary physician level?  At the social worker level? At the level of the geriatrician or their team?  At the community nursing, or at the caregiver/home care services company level? 

Or perhaps, as alluded to, we need a standardised model of care that addresses the necessary interactions of all components, and that would include the development of an integrated community model, to better address the development of age friendly communities.  There is no point in developing age friendly community concepts without integrating its intersection within the wider boundaries of the holistic care model.

From this wider perspective, we may come to realise that caring for the older adult with or without complex care needs is something that needs to be addressed within a wider community based model of care.  This is especially when we realise that there are so many organisations out there that provide support and services, across the spectrum of care, both for profit and not for profit. 

Our community resource centres are not part of our care model for nothing; an adjunct to this is that we believe very much in the gate keeper role that all those who work with older adults with complex care needs perform.  Be aware of your interactions, widen your knowledge base and realise that you are one of many within a web or chain of care that links the person to the wider holistic solution. 

But the wider holistic model of care should address the impaired interaction of the private home care industry and the state’s own funded services; at least this is our viewpoint of the Canadian private home care market place.  Otherwise we risk large swathes of care being delivered within business models that are essentially remote from the necessary ethical focus of person centered care interactions. 

The search for person centeredness is effectively also a search for an holistic model and better definition of the areas where the practitioner and the care provider and the wider community of care providers interact.   Holistic is therefore knowing the whole and addressing the whole along an integrated chain of care that extends from the primary physician, at one end, to the community and social infrastructure, at the other. 

Remoteness

Remoteness is another issue: a series of remote actions attempting to address the whole itself may have good intent, but are its outcomes optimally holistic? 

What do we mean by remote actions? 

A good example is that of a physician assessing the care needs of an elderly person, and then instructing that person to purchase private homecare or other services but with no specific recommendation or hand over.  As such, responsibility for care may be towards an entity remote from the initial interaction and assessment.  Much of the impact of the person centered interaction risks being lost if the ongoing care provided by the eventual service provider selected lacks a similar person centered frame.

Also, remoteness can exist when an organisation’s own service delivery imperatives override the expectations of the care professionals’ own assessments of care and recommendations.  One of the reasons person centered care has come up against obstacles, is not necessarily a failure of intent on behalf of practitioners, but a failure of the wider system to refocus its operation around the imperatives and wider dynamics of PCC. 

With restricted government funding of home care in the community the issue of remoteness is very real.  Remoteness is a risk across the “chain of care” where there is lack of integration along the chain of care and especially so where there is a divide between public/state medical care and private sector home care.  In Ontario, it is still very much our understanding that there is no single assessment process and a great many of the hand-offs to private care businesses may suffer from remoteness issues.

Our community resource centres provide an anti remoteness functionality in that they continuously reconnect ourselves with the wider community.

Identity

Our own meaning in life may also depend on the meaning we see and can affect in others. Identity is a universal issue and the need for meaning exists essentially, and existentially, on both sides of the relationship.

Therefore, person centered care at its most fundamental is a metaphysical connection, an acknowledgment of the importance of identity for both sides.   In the process of discovery we shape our own meaning.  Person centeredness in this respect is the establishment of identities and relationships.  Perhaps it is also the establishment of these identities which allows the person, the client, to connect and to relate and likewise the practitioner or service provider – in reality home care service provision should be provided from the position of practitioner. 

We need to model care as an organisational whole to support identity and meaning and outcomes

The development of PCC identities and relationships are often in conflict with the other constraints and objectives of an organisation,let alone the individual practitioner.  In this respect it may be useful to model for the functions that involve person centeredness and acknowledge the value of such interaction within system design. 

We also need to consider institutional processes of care, rules, rather than persons, as identities derived from bureaucratic and operational rather than personal imperatives, that may have led to the distance we see and are attempting to close. 

Person centered care relies on the existence of parallel ethical systems for initiation and this interaction is weakened if costs, profits and competitive market concerns dominate the resource allocation decision and the frame in which the order of priorities are determined.  The ethical frame should span the entire system.  The ethical frame is essentially a best interest standard model.

Perhaps we should bring all the extraneous and important non care functions, that direct the model of care, into the person centered care frame.  That is certainly what we attempt to do at Mosaic.   

In this respect we may need to change the way we frame the problem, at all levels, in order to develop a solution compatible with the problem. 

The following from “Barriers and facilitators to the implementation of person-centred care in different healthcare contexts” highlights many of these challenges:

We describe how researchers are helped or hindered when developing PCC interventions in practice. Organisational systems, professional attitudes and factors associated with the delivery of their research, worked for and against PCC. Research suggests that paternalism and organisational elements in Swedish health care prevent patient participation despite legal requirements [32]. However, this study details examples from practice where barriers are overcome through multidisciplinary team working, across organisations. Seeing patients and professionals as equal co-workers combats biomedical traditions…….PCC has the potential to transform patient care and clinical practice. However, for the PCC approach to be successful, there needs to be a power shift and a mindset change to allow the space, time and opportunity to focus on the narrative and partnership..

All systems are essentially models; to identify and solve problems within a system we need to view them as interactions within models.  Defining a global model of care across dimensions that include the chain of care and its specialisms and the person’s own dimensions of being impacting well being, is no mean feat.  Moving from the model, the concept, the idea to adjusting operational processes, structures and the mindsets that frame the delivery of care more so. 

As a provider of health care services to older adults we also have to refer to expertise in the very important modelling/systems area.

If the value of holistic health care is not factored into assessment of operational needs then addressing the wider person risks being a perpetual system conflict. 

Along the “chain of care” interaction, we have an ethical obligation to deliver care that fleshes fully with the needs of the person, if the objective of care is to close down these gaps in care outcomes. 

PCC is not a “touchy feel good” need that the care provider wishes to live out.   We know that loneliness and isolation can have quite dramatic impacts on health, for older adults, yet a healthcare system that does not address these issues somewhere along the chain of care does risk impaired health care outcomes.  

Solutions embodied in redefining process and structure to dimensions of being that impact care outcomes is one that provides a supportive environment in which the identity of the person in need of care can be established.  We believe that this holistic whole, the supporting structure that permeates the spectrum of dimensions that determine identity and hence meaning, may be important in establishing an effective person centered care relationship.  Our focus on the whole is also an important reason why we engage in so much community outreach.

Not all person centered care interactions are going to be equal. 

That should be clear.  For the older adult with complex care issues, where personal supports are provided to aid aging in place, we are likely to have a much wider dynamic.  We have the medical issue; the personal support issue; the decline in independence and interactions both at home and in the community; and while personal supports and other services help support that independence, the person is still subject to a) loss of necessary and meaningful interaction and b) the risk of being addressed through a largely medical/personal support frame. 

In this developing context, there are evolving person centered care interventions and evolving dimensions of need as we progress along the chain of medical and personal support interactions.  

Clearly, attitudes towards person centered care, while necessary, are not a sufficient condition for successfully implementing person centered care initiatives across the chain of care.

If identity is important in delivering person centered care then we may also need to fully support and define the whole rather than the parts.  How the whole is defined and supported is another layer to the problem.

At Mosaic we believe that our role as providers of personal and nursing support to the person in their home and their community, puts us in a special position.  Identity extends the personal support and medical interaction to the many dimensions of the mind and the community.    

Homecare: a hub where many issues intersect.

Home care is one of the furthest points along chain of care that you can get for the older adult. 

Home care occupies an important space in the care continuum, dominating essentially large parts of the person’s space and time. 

Importantly the home is especially relevant to aging in place dynamics and community interaction and is therefore much closer to the personal centered care dimensions of the mind and community. 

It was this proximity to community and place, engendered by our long standing belief in the importance of community towards aging in place and age friendly communities, that helped gather our minds’ eye on “The Meaning of Me®” as an important interface to the person that we care for.

We believe that the rationale for the provision of home care services lies primarily in the development of advanced interfaces to the person in need of care.  These interfaces include not just those with the focus of “TMOM®” but also the development of interfaces with other areas of expertise, most notably geriatric care expertise with respect to complex mental and physical challenges of older adults.  It is the need to open up the home care model via the central oversight that is a core engine of home care that has helped drive our “TMOM®”.

We do not believe that the current app driven model of care that focus on cutting the costs of intermediation, reducing the labour costs of care coordination and, in some of the models we have seen, of effectively transferring responsibility for the quality of care to individual private caregivers, is the most effective route to go for PCC or any other outcome. 

The home care model does depend on volume and many of the new app driven models are much more dependent on higher break even points given their software development costs and need for higher levels of tech support.  This perhaps greater focus on margins at an earlier point in their business models does risk creating significant gaps in care.  Importantly, with the ease in which care can be ordered, there is a much higher risk that those other than the person in need of care are going to be excluded from the decision process. This in a sense is hard coding issues of remoteness into the system.  Technology is of course important in designing interfaces but we must be careful to retain the core interaction of personal centered care.

This brings to the fore a need to develop a universal standard model of home care with expectations over person centered care interaction, community integration and the availability of interfaces for physicians and geriatric car professionals to keep closer connections to the persons in need of care.

We see our “The Meaning Of Me®” interface as part of the evolution of the home care model in the community and one that reaches ever closer to the person within the family at the heart of the community.