An Alternative Model of Care for People with Chronic Disease

Michael Gill[1]

Abstract

This opinion piece challenges the concept of ‘patient’ and discusses an alternative aspect to delivering health care for those with chronic disease.  Chronic conditions are defined by the World Health Organisation (WHO) as illnesses requiring ongoing management over a long period of time and may address a wide range of health issues.   Success is highly dependent upon optimised patient empowerment[2].  We argue that it is not health care that really matters but opportunities to build upon optimising wellness.  This leads to the idea where we suggest that current health system rigidities inadvertently promote illness. 

Introduction

This paper is not written by a condition, not by a patient, not by an illness but by a human with a chronic disease.  The term ‘patient’ is in many ways objectionable as it dehumanises and promotes passivity.  The patient is being ‘done to’ but most people tend to collaborate in order to achieve a goal.  The goal for people with chronic disease[3] is to be functional; to sustain quality of life and to participate in what life has to offer.

The problem is that the management of wellness and illness for the chronically ill just does not happen commonly, systematically or as a matter of normal operation as the current health system operates via an acute paradigm. Team care arrangements for GP’s and Allied Health providers are available but few actually prosecute these plans to completion[4].  Wellness and illness are considered separately with the medical fraternity and their associated jurisdictions concentrating heavily upon managing the symptoms whereas wellness is given little prominence.  The Self Care Continuum illustrates this.[5]

I suggest that a person with a chronic disease has to build and reinforce what wellness they have (far left of the above diagram) in order to manage the debilitating aspects of their disease more effectively.  Without this approach they end up being ‘medical patients’ having only their symptoms prosecuted often in complete isolation of what is needed for a better life.  For example, the contribution of medical science through drug therapies offer significant functional improvements.  The biologics used for rheumatoid arthritis such as Tocilizumab have been singularly successful.  I am not suggesting an either/or position but one where some form of partnership and increases in health literacy operate positively to the benefit of both parties.  The importance of partnership and communication between consumers and health professionals must therefore be underlined and emphasised in any drive for self-care[6].

Augmented Wellness

The role and position of the specialist is fundamental.  I have no issue with their expertise or motivation.  The time pressures on these individuals means that their ‘patients’ only access them when in a crisis or for symptom monitoring.  Their ‘patients’ are in most cases left to get well and/or to manage the illness-wellness balance outside the consulting room irrespective of their capabilities to do so, with or without the assistance from their GPs.  The general practitioner is also put in a position of examining peripheral symptoms like pain and depression and not coordinating a wider care plan because of the excessive administration required.

Terms like ‘case management’, ‘patient co-management’ and ‘integrated care model’ are often used in the literature.  Some initiatives are indeed successful in improving the quality of life for the individual concerned with examples from diabetes, hypertension and breast cancer management as stand out examples.  Physicians from an 11-country survey[7] reported that use of such teams is wide- spread in most of the countries surveyed but Italy was the only country where a majority of doctors reported routinely giving patients written instructions on how to manage their care at home.  It was unclear if the survey also considered the use of Allied Health.

The expansion of this type of approach nationally is both costly and practically unlikely, given the current jurisdictional institutional structure.  Within this environment health insurance companies, private companies and certain health managed geographies have stepped in and realized that a greater play of resources in making the chronic disease ‘patient’ well and getting them back to work is indeed a much more cost effective approach.[8]  While these approaches extend the reach and impact of managed health care, the patient is effectively disenfranchised.  In the end the person seeking illness care bears the costs, lives with the pain and carries the consequences; not the clinician and not the system.  When they are treated as patients, when they are limited to being ‘done to’ they are prevented from taking control of their own disease.  They are, in effect, disenfranchised.

Augmented Care = Wellness + Illness

I postulate that augmented care is an equation that considers wellness and quality of life to be equal in focus to the treatment and management of illness.  Both are essential to improving life style for the chronically ill.  The enabling characteristics include:

The ill person being encouraged to take ownership and control for managing their chronic condition, the clinical data and the administrative processes;

  • Being provided with the necessary tools;
  • Being provided with suitable navigation services to access the various parts of a larger health system;
  • Removal of much of the red tape;
  • Involving the ill person in the development of an agreed care plan; and
  • Developing an approach that would allow the ill person together with a nurse/navigator to operate the care plan.

The examples listed in the footnotes are moving in the direction of Augmented Care but still place the clinician at the centre, not the ill person.  None of the above points are particularly radical and have been discussed, mostly separately, by many authors.  What may be radical is integrating all the above in to a single response and organising service around the person.

Organising wellness and illness care around the person promotes self-help.  It also makes it possible to include the primary caregiver.  This is an area often ignored.  People with serious chronic disease require detailed support from their partner, relative or friend over an extended period of time particularly during periods of crisis.  The role of the caregiver is vital as they represent an in-house coach, educator, counsellor and helper.  I suggest that where the carers are deliberately included in the execution of a care plan, optimal medication management and wellness outcomes are more evident. 

Augmented care relies upon Allied Health providers as the main providers of regular support services.  These individuals take a much more dominant role in providing wellness services.  The success factors relate to the avoidance of hospital admission when the condition exhibits acute characteristics , for example, rheumatoid arthritis chest pain resulting in unnecessary admission. 

Augmented care requires the provision of smartphone and online tools.  The broad areas addressed include medication management, events calendar, self -observation records, selected medical literacy improvements; and tools for crisis alert, nutrition improvement, online mental health assessments and exercise.

The health system and its institutions and interest groups are a given.  While many resources exist and are often available, few are easy to find and interact with.  I believe that a nurse/navigator is a very worthwhile addition to augmented care operation.

Conclusion

Augmented Care is about maximising wellness and focuses the self-care continuum towards patient centricity.  It is ideally suited to online service delivery combined with more conventional methods.  Augmented care is a break away from simple monitoring symptoms towards encouraging and equipping the person to management their own condition most of the time. Augmented care is about supporting the wellness side of the equation then linking this to living successfully with the chronic condition.

References

N. Unwin, J Jorden and R. Bonita, Rethinking the terms non-communicable disease and chronic disease; Journal of Epidemiology & Community Health 2004;58:801

Australian Institute of Health and Welfare, Chronic Diseases and Associated Risk Factors in Australia, 2006, AIHW cat. No. PHE 81, November 2006


[1] Founder of Dragon Claw www.dragon-claw.org reducing isolation and stress for those with rheumatoid arthritis and lupus.

[2] N. Unwin, J Jorden and R. Bonita, Rethinking the terms non-communicable disease and chronic disease; Journal of Epidemiology & Community Health 2004;58:801

[3]Chronic diseases(including cancers)were responsible for more than 80% of the burden of disease and injury in Australia over 2006. AIHW, http://medicarestatistics.humanservices.gov.au/statistics/

[5] self-care-and-why-is-good-for-people/

The Self-Care Continuum, Self Care Forum; http://www.selfcareforum.org/about-us/what-do-we-mean-by- self-care -and-why-is-good-for-people/

[6] GAP( Global Access Partners) Task Force on Self-Care, June 2015, Sydney

[7] Cathy Schoen, Robin Osborn, Michelle M. Doty, David Squires, Jordon Peugh, and Sandra Applebaum; A Survey Of Primary Care Physicians In Eleven Countries, 2009: Perspectives On Care, Costs, And Experiences. Health Affairs, DOI 10.1377/hlthaff.28.6.w1171 ©2009 Project HOPE–The People-to-People Health Foundation, Inc

[8] Examples include Bupa Health Insurance using diet consultants to telephone selected members with severe conditions over an 18 week period and assisting them to improve eating habits.  Another includes Queensland Health, southern region, using telephone councilors to improve life style factors via a program called +Impact .  Yet another is the Precedence Health Care project CDM-Net: A Broadband Health Network for Transforming Chronic Disease Management, conducted in Barwon South Western Region of Victoria and Eastern Goldfields Region of Western Australia.

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