Innovations in End-of-Life Care
an international journal of leaders in end-of-life care

Clinical Pathways for Care of the Dying
An Innovation to Disseminate Clinical Excellence

John Ellershaw, MA, FRCP

[Citation: Ellershaw J. Care of the dying: Clinical pathways - An innovation to disseminate clinical excellence.Innovations in End-of-Life Care. 2001;3(4), www.edc.org/lastacts]

This issue of Innovations features the development of two palliative care services, those offered by The Beth Israel in New York and the University Hospital in Trondheim, Norway. The authors of these articles, Drs. Portenoy and Kaasa, share their experiences, which include the challenges of evolving new services.

Palliative care services include inpatient and outpatient care, day therapy, bereavement care and a specialist advisory role in both community and hospital settings. This clinical activity is supported by education and research activity. Palliative care services may offer all of these elements, but more commonly focus on specific areas. There is an increasing emphasis on rehabilitation and a current trend towards including non-cancer patients. These new developments may give the appearance of a reduced emphasis on the care of the dying. Specialists in palliative care may assume that this aspect of care is well recognized and so are keen to emphasize other aspects of care. This attitude may be complacent. The model of excellence for care of the dying developed throughout the palliative care world has been under-researched and poorly disseminated outside the palliative care unit/hospice setting.

Palliative care developed in response to increasing concern about the standard of care for dying patients and their families.¹ There were several widely publicized cases where patients died without dignity and with poorly controlled symptoms. These cases also revealed inadequate support for families and a disregard for the spiritual element of care. Health care professionals trained in a culture of "cure," seemed unable to respond to the needs of the dying patient and their families. Dissatisfaction with this situation provided the impetus for the pioneers in palliative care, to demand a fundamental change in attitude towards the care of dying patients and their family/carers. It is imperative that as a palliative care movement we capture this model of excellence in care of the dying and hold it as a beacon to be clearly seen and understood. It can then be translated to other care settings and delivered by other health care professionals.

Dr. Bookbinder’s article on the Palliative Care for Advanced Disease pathway (PCAD) featured in this issue is an important example of how best practice for care of the dying can be delivered in all health care settings by empowering health care professionals to deliver high quality care to dying patients.

Integrated Care Pathways (or Clinical Care Pathways) have their origins in the United States.² Over the past decade they have gained popularity in the United Kingdom and in Europe.^3,4,5 An ICP is developed by the multiprofessional team involved in the caring process and should incorporate evidence-based practice and appropriate guidelines.^6,7 The ICP then acts as a template describing the process of care that is generally delivered in a given clinical situation. The ICP outlines both the role of each health care professional involved in the care of the patient and their family/carers and details of the expected outcome of such care delivery. These outcomes are then recorded on the ICP. If the expected outcome is not achieved, then the reason is documented. This deviation from expected care delivery is called a "variance."

Variances from the pathway are acceptable but need to be documented along with an explanation for the variance. It is important that health care professionals recognize that the need to record variances and the education to encourage this documentation, represent key challenges during the initial implementation of a care pathway. A review of the variances will often identify areas of educational need or resource issues, which when addressed will improve care delivery. As well as deficits, variances also show more effective ways of delivering care, in turn leading to further modification of the ICP. The ICP is a dynamic document which will evolve over time and may in some circumstances replace all other documentation and becoming a central coordinating document of care.

The philosophy of palliative care emphasises a holistic approach to an individual and the family/carers. ICPs initially seem at odds with this philosophy, appearing too rigid to facilitate the delivery of care in a palliative care setting. However, several care pathways, including the PCAD pathway, have been developed in a palliative care setting.^8,9,10 ICPs do not prevent the delivery of individualized care, instead they allow the clinical freedom to provide care within an evidence-based framework. They are particularly appropriate in palliative care, acting as a multiprofessional document which staff can use to coordinate and record the care of the patient.

Transferring the palliative care model of excellence for care of the dying into the hospital and community setting is, I believe, one of the greatest challenges for the palliative care movement. ICPs are potentially a powerful tool in the achievement of this goal. There are a number of important steps in the care of the dying which are often considered routine in a palliative care unit/hospice, but are often only partially or poorly performed in other health care settings.

The hospital setting has a strong emphasis on cure and the concept of diagnosing dying is almost counter culture. Consequently, doctors are often reluctant to diagnose dying. Instead they feel that there must always be additional investigations or treatments to make the patient "better." This attitude can be very destructive. The patient and family/carers are led to believe that improvement is possible or likely. When the patient then deteriorates and dies, the family may be left with a feeling of betrayal and lose trust in the health care professionals. The patient’s death can appear unexpected and the relatives are unprepared, often expressing the wish that they had been warned – "If only someone had told us."

As in other aspects of medicine, the diagnosis of dying is a combination of science and art. If we believe that the patient is in the dying phase, then we should care for the patient and family/carers appropriately. One of the barriers to diagnosing dying is that health care professionals may not know what to do next for dying patients, and therefore continue active treatment. An ICP for the dying patient at this point is an important tool.

The very existence of an ICP for the dying patient in a clinical setting makes health care professionals aware that there is a model of excellence for care of the dying and that in order to deliver this, a diagnosis of dying must be made. In some situations a dying patient may occasionally improve, in which case the ICP for the dying patient is discontinued. However, to my knowledge this has never been to the detriment of either the patient or the family/carers.

When the patient enters the dying phase they are generally semi-comatose, unable to take oral medication and have become bed-bound. The median time to death given these criteria in cancer patients is 2 days.¹¹ This is a common scenario for cancer patients, but can not be extrapolated to all patient populations. It is of vital importance that the multiprofessional team agree that the patient is dying and so a diagnosis of dying can be made. Disagreement in the team can mean that the patient and family/carers receive conflicting messages.

When the patient enters the dying phase in a palliative care unit/hospice, an active process of care for both the patient and family/carers is initiated. In contrast, particularly in hospital settings, staff may withdraw at this point in time. The active process of care includes reviewing the patient’s medication. Non-essential drugs are discontinued and appropriate medication is prescribed with consideration of the route of administration. The relatives are made aware that the patient is dying and the religious/spiritual needs of the patient are addressed. These and other important aspects of care are identified in the PCAD pathway.

It is important that an inpatient be reviewed on a regular basis, with at least four hourly observations of symptom control and appropriate action taken if required. Particular attention is paid to pain, agitation, respiratory tract secretions, mouth care and micturition difficulties. It is also important that appropriate psychological and religious support be given to the patient and family/carers.

To develop and implement an ICP for the dying patient and subsequently deliver a high standard of care would appear straightforward. However, the practicalities of actually achieving this are seismic. If best practice is to be achieved in the care of the dying, it is not just the acquisition of knowledge and skills, which is required, but also a change in attitude, especially in the hospital setting.

The education role of palliative care teams is well-recognized but often poorly achieved. The clinical workload frequently excludes the possibility of an education program and even if this can be delivered, exposure to theory often does very little to change clinical practice as Dr. Portenoy highlights in his interview in this issue.

To achieve a change in practice by implementing an ICP involves a major time commitment. First, it needs to be introduced into an organization that has signed up at the executive level to implement it. The next step is to undertake a Base Review. This is a retrospective review of current practice and establishes a base line from which post-implementation data can be compared. It also encourages the development of reflective practice in the health care professionals who are using the ICP.

It is important not to underestimate the amount of educational commitment required in order to implement an ICP for the dying patient. It can take from 6-18 months before the ICP can be introduced into a new clinical area. Importantly however, the ICP can be a powerful educational tool for palliative care professionals. So often we educate at a level which merely informs the participants that we know more than they do. As a result, when health care professionals care for a patient with palliative care needs they automatically refer to the palliative care services. This leads to overall deskilling of health care professionals. Palliative care advisory teams can never hope, nor should they aim, to be involved in all deaths occurring in hospital and community. It is essential that generic palliative care, including care of the dying, be delivered by all health care professionals. It is of critical importance that an ICP for care of the dying facilitate education at a level appropriate to the generic health care professionals, to avoid deskilling and to promote empowerment of staff.

On a broader educational theme, the integration of palliative care ICPs into health care professionals’ education programs, not just at postgraduate, but at the undergraduate level as well, is a good opportunity to influence attitudes at an early stage in their training. If nurses and doctors are familiar with such tools when they commence practice, they will provide a powerful model for care delivery. Indeed, in his interview in this issue, Dr. Kaasa describes a vision of an international curriculum of palliative care. Undoubtedly, the components of an ICP for care of the dying patient should be an integral part of any such curriculum.

Interestingly, the role of an advisory palliative care team is influenced by the implementation of a care of the dying pathway. At first it may appear as a threat to the team, conveying the message that palliative care is predominantly about care of the dying. In fact, experience proves otherwise. The intense educational process and program that is undertaken around the role of the palliative care services impacts on the understanding of all health care professionals. The knowledge, skills, and attitudes gained during the implementation of the care pathway will have an influence on the care of patients earlier in their disease, including improvements in symptom control and communication skills. Frequently the experience of palliative care teams is that following the introduction of a care pathway, health care professionals use the team more appropriately.

Introducing an ICP for the dying patient in a hospital or community setting can clearly lead to benefits for patients and their family/carers. However, the benefits of introducing it into a palliative care unit/hospice are perhaps less clear. Why introduce a document into a care setting where we already have a model of excellence for care of the dying?

Outcome-based culture within palliative care is poorly developed. The introduction of ICPs provides the potential to overcome this problem. By documenting the process of care, demonstrable outcomes can be identified which can then be audited to set standards^12,13 and facilitate reflective practice (e.g. case audit). It has been said: "If you try to measure something that is important, what you measure then becomes important." Therefore it is important that outcome measures from an ICP capture the physical, psychological, social, and spiritual aspects of palliative care.

Clinical pathways are an innovation that can lead to dissemination of clinical excellence in palliative care. The PCAD pathway is an example of an ICP which leads to the empowerment of health care professionals enabling them to deliver a model of excellence in care of the dying, which if widely implemented has the potential to improve quality of care for all dying patients. ICPs can be used to promote the educational role in palliative care and to develop the role of specialist palliative care advisory teams. If health care professionals need further convincing of the importance of providing a high standard of care for dying patients, they should consider this comment made by a husband, following the death of this 40-year old wife: "All the excellent treatment and care that went before meant nothing because she died a painful, undignified death."

ICPs also have the potential to set standards and be used for quality assurance within palliative care unit/hospice settings. Most of all, they can perhaps achieve what the pioneers in palliative care most desired and society increasingly demands—that the culture for care of the dying be fundamentally changed.

References:

1. Clark D. Originating a movement: Cicely Saunders and the development of St Christopher’s Hospice 1957-1967. Morality. 1998;3:43-63.[Return to Editorial]

2. Zander K. Critical Pathways: Total Quality Management. Chapter 9 in The Health Care Pioneers. Chicago: American Hospital Publishing, 1992,305-314. [Return to Editorial]

3. Overill S A. A practical guide to care pathways. Journal of Integrated Care 1998;(2):93-98.[Return to Editorial]

4. de Luc K. Developing Care Pathways – The handbook. Oxford: National Pathways Association, Radcliffe Medical Press, 2001 [Return to Editorial]

5. Campbell H, Hotchkiss R, Bradshaw N, Porteous M. Integrated care pathways. BMJ. 1998;316:133.[Return to Editorial]

6. Working Party on Clinical Guidelines in Palliative Care. Changing Gear – Guidelines for managing the last days of life in adults. National Council for Hospice and Specialist Palliative Care Services. Northamptonshire: Land & Unwin (Data Sciences) Ltd., 1997.[Return to Editorial]

7. Adam J. The last 48 hours.BMJ. 1997;315:1600-03.[Return to Editorial]

8. www.stoppain.org (Beth Israel Medical Center).[Return to Editorial]

9. Ellershaw J, Foster A, Murphy D et al. Developing an integrated care pathway for the dying patient. European Journal of Palliative Care. 1997;(4):203-07.[Return to Editorial]

10. Gordon DB. Critical pathways: A road to institutionalising pain management. Journal of Pain & Symptom Management. 1996;(11):252-59.[Return to Editorial]

11. Ellershaw J, Smith C, Overill S, Walker S, Aldridge J. Care of the dying: Setting standards for symptom control in the last 48 hours of life. Journal of Pain & Symptom Management. 2001;(21):12-17.[Return to Editorial]

12. Ellershaw J, Smith C, et al. 2001.[Return to Editorial]

13. Kitchener D, Davidson C, Bundred P. Integrated care pathways: Effective tools for continuous evaluation of clinical practice. Journal of Evaluated Clinical Practice. 1995;(2):65-69.[Return to Editorial]

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