The Bow Tie Model of 21st Century Palliative Care

The World Health Organization’s (WHO) definition of palliative care¹ has evolved such that the recipient’s illness is no longer required to be deemed incurable. Palliative care is now described as an approach applying to “life-threatening illness”, and “applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life”. This modern definition aims to include patients at a stage in their illness when cure may be unlikely, but not impossible.

Despite this evolution in understanding of our specialty, access to palliative care is still hampered by public perception that palliative care is synonymous with dying. Palliative care teams are still often only resorted to when all hope of cure or disease control has been lost. Late referrals limit our ability to achieve maximum potential for the relief of suffering and medical care cost containment.^2-5

Misunderstanding is very understandable given the relatively rapid development of the specialty and the widely varying levels of access to palliative care services across the country.  Confusion also results from the plethora of terms used to describe the many palliative care services offered throughout the disease process, such as; supportive care, hospice and end-of-life care. The unfortunate word terminal is also still often seen in the media. Some programs working towards earlier integration with disease management have even changed their names because of the association of the term palliative care with dying⁶.

If we cannot agree on consistent terms to describe what we do, how can we expect our colleagues and potential consumers of our services to understand?

Visual models can be helpful tools to explain complex concepts, and have helped advance the understanding of palliative care since the term was coined in Canada over thirty years ago.^5,7 Visual models that illustrate a gradual transition from curative intent treatment to palliative treatment are plentiful.  A simple Google pictures search shows many versions of the horizontal, diagonally divided rectangle.  Some include a tapering triangle of bereavement on the right, and the diagonal line is often undulating or fuzzy^8,9. A typical example is the Canadian Hospice Palliative Care Association’s 2002 model shown in Figure 1¹⁰.

Figure 1

Entering a pathway in which the only possible outcome is death is not inviting to patients and their families. If early integration of palliative care with disease management is the goal, then the possibility of cure must still be recognized when considering a referral, at least in the short-term. If we can’t “get them in the door” much of the benefit of palliative care will be lost by being too late in the course of illness.

I propose a new model to describe palliative care which acknowledges the duality of an approach that prepares patients for the worst (death) but still allows hope for the best (cure). The goal of this model would be to illustrate a process in which the possibility of dying can be gently introduced at a time when patients’ and families’ thoughts may be consumed by hope of cure. The model consists of two overlapping triangles, resembling a bow tie, with an arrow pointing from left to right (Fig.2). The first triangle represents disease management and the second triangle is palliative care. The base of the palliative care triangle (end of the model) includes both death and survival as possible outcomes. The arrow indicates that this is a dynamic process with a gradual switch in focus. The key difference between this and traditional models is that survivorship is included as a possible outcome.

Figure 2

The model’s simplicity does not diminish its power as a communication tool, as it can be enhanced to explain complicated concepts for individual situations and adapted for any life-threatening illness.  For example, it may be used by any member of the health care team, or by friends or family of the patient, to illustrate where the various components of modern supportive and palliative care might fit into the patient’s journey along with anti-cancer treatments (Figs.3 and 4). The contents of the triangle can be adapted to explain the services available and terminology being used in any setting.  The direction of the model can be reversed for cultures with a written language which goes from right to left. The simple design makes it easy for care providers (whether professionals or not) to generate it quickly for patients.

Figure 3

Figure 4

The brief example shown here should not be seen as excluding any of the many vital aspects of palliative care, including psychological, spiritual and social support, advance care planning, music and art therapy, physiotherapy or respiratory therapy etc. As with the myriad of available disease-modifying treatments, the many types of palliative care interventions are too numerous to list, but labels can be added by the user to create a care map tailored to an individual patient’s circumstances and needs. For example, the map for a patient with COPD may have very different labels than that of a cancer patient, but the anchor umbrella terms of Disease Management and Palliative Care apply equally to both.

My “Bowtie Model” is not intended to imply that all palliative care teams and hospices should provide rehabilitation and survivorship support; it is just to show and reassure patients that these services are not excluded as possible components of their care in the future. Also it would not be necessary to use a communication tool like this if the patient and family have already accepted the inevitability of death.

My intention is that the Bowtie Model will be a useful communication tool to describe a care pathway where disease modification and a palliative approach to care are integrated from the time of diagnosis, when the possibility of death may be too frightening for the patient to contemplate. My intention in sharing this is to allow for recognition of an exit strategy other than death, and thereby facilitate earlier acceptance of the role for palliative care for people diagnosed with serious illness.

January 2015

References

1. World Health Organization: Cancer Pain Relief. 1986. WHO website 2013
2. Biasco G, Tanzi S and Bruera E. Early palliative care: how? J Pall Med 2013, 16(5):466-470
3. Smith T, Temin S, Alesi E et al. American Society of Clinical Oncology provisional clinical opinion: the integration of palliative care into standard oncology care. J Clin Oncol 2012 10;30(*):880-7. Doi: 10.1200/JCO.2011.38.5161.
   Epub 2012 Feb 6
4. Temel J, Greer J, Muzikansky M et al. Early Palliative Care for Patients with Metastatic Non-Small Cell Lung Cancer. NEJM 2010;363:733-42 
5. CHPCA and Quality End-of-life Care Coalition of Canada “The way forward integration initiative” resources Documents available through this website:
   •    Synthesis of Recommendations from National Reports on Hospice Palliative Care [May 2012]
   •    The Palliative Approach: Improving Care for Canadians with Life-Limiting Illnesses [August 2012]
   •    Integrating a Palliative Approach into the Management of Chronic, Life-Threatening Diseases: Who, How and When? [December 2012]
   •    Cost-Effectiveness of Palliative Care: A Review of the Literature [December 2012]
6. Bruera E, Hui D. Integrating Supportive and Palliative Care in the Trajectory of Cancer: Establishing Goals and Models of Care.  JCO 2010, 28(25):4013-4017
7. Bhang T. Creating a climate for healing: a visual model for goals of care discussions, J Pall Med July 2013, 16(7);718
8. Medical Care of the Dying 4th Edition, Victoria Hospice Society 2006, pages 15-19
9. Morrison RS. Research priorities in geriatric palliative care. J Palliative Med 2013 July, 16(7);726-729
10. Ferris FD, Balfour HM, Bowen K, Farley J, Hardwick M, Lamontagne C, Lundy M, Syme A, West P. A Model to Guide Hospice Palliative Care: Based on National Principles and Norms of Practice. A Model to Guide Hospice Palliative Care. Ottawa, ON: Canadian Hospice Palliative Care Association, 2002.
    Page 15, Figure 7.