Palliative care in MS

Lucy Sutton, Former Director of Policy Development
National Council for Palliative Care (NCPC), London

Way Ahead 2010;14(1):8-9

Introduction

Specialist palliative care services (SPC) were originally established to address the needs of people with different types of cancer. In more recent years, there has been an increasing recognition of the end of life care needs of people with conditions other than cancer which span the last year or months of life^1-3. However, records suggest that between 2007 and 2008, of all patients receiving support from hospital palliative care teams, only 15.9% had a diagnosis other than cancer⁴.

In view of the context out of which specialist palliative care services have emerged, the current model of services may not be the most appropriate for people with other conditions such as MS. Instead, a model whereby health professionals in touch with the unique needs of specific patient populations, such as neurology and MS specialist nurses, are equipped with the skills, support and expert advice, is likely to be more appropriate and better meet specific end of life care needs.

What is end of life care?

End of life care is less about the very end of life and more about the specific needs along the whole care pathway. The supportive and palliative care needs that it entails will be required in the last year or two of life for some, but for others, particularly those with long-term conditions like MS, these needs may come and go throughout the whole pathway.

Research has shown that people with MS have similar needs to those with other advanced conditions⁵ (see table 1). Evidence suggests that palliative care helps with symptoms that may be experienced by people with MS, such as pain, breathlessness, spasticity, as well as nausea. However, there are some specific issues to address when considering end of life care needs in people with MS. People often cite the unpredictability and variability of the disease as a reason to not consider end of life care needs - but is this really any different in conditions such as cardiac or respiratory failure, for example? Is this a good enough reason to do nothing? If end of life care needs can start early in the care pathway does it matter? Is it ever too early to help someone with advance care planning? This is a particularly important issue to consider given the cognition and communication problems that may present in the later stages of the disease trajectory for people with MS.

National Council for Palliative Care

To tackle some of these issues, in 2004 the National Council for Palliative Care (NCPC) set up a group of experts from across different sectors, settings and professions, looking at how the needs of people with neurological conditions could best be met. The group was established to help services implement the recommendations within NICE guidance and the National Service Framework for Long Term Neurological Conditions³, and five years on, is in an ideal position to help services and practitioners implement the End of Life Care Strategy.

In meeting the specific palliative care needs of people with MS, it was recognised that a coordinated approach from palliative care, rehabilitation and neurology services was needed. Research into the current status of such coordination led the group to the following conclusions:

services are currently under-provided and poorly coordinated. In spite of this, each individual specialty expressed a willingness to commit some of their time in addressing the issue. It was evident that this did not happen in practice, particularly in the community where care appeared to be even more fragmented;
there is considerable overlap in the activities of each specialty and it is clearly important that the different professionals respect each other's role, not only in their primary areas of clinical practice; but also in the overlapping areas - particularly those of symptom control, social, and psychological support;
closer collaboration and service planning is needed across the interface. For each specialty the largest area of concern was lack of coordination, with the different services 'working in isolation'. From the palliative medicine perspective, this resulted in very few referrals being made to them, or random referrals that were poorly reflective of need.

In view of these findings, the group committed itself to the development of a care pathway (see Figure 1) to facilitate coordination between services. As part of this work, some examples of good practice were identified and illustrated in a special issue of Focus on Neurology⁶ with the aim of helping practitioners and services learn from each other.

The development of the pathway highlighted the pivotal role of specialist nurses in meeting the end of life care needs of people with MS. The group felt it was important to gain an insight into the current practice and training needs of these nurses and therefore conducted a survey of nurses working in neurology.

The survey revealed that whilst over 80% of MS nurses said the NCPC pathway would be useful in their practice, few were aware of its existence. 75.5% of MS nurses also told the group they had unmet training needs; mainly relating to symptom control, end of life care and ethical decision making7. These training needs have partly been addressed through a series of RCN/NCPC joint workshops but, it is also important that nurses know what other end of life care training is available at national, regional and local level.

For nurses wishing to access further training, there are a number of first steps:

find out who your local end of life care lead is within your primary care trust and local authority;
find out what your local end of life care strategy says; and
find out what end of life care workforce development is going on both within your local and regional level (there will be an end of life care workforce lead within your Strategic Health Authority).

There is also other national work that may help you:

in June 2009 Common core competences and principles for health and social care workers working with adults at the end of life8 was published for training health and social care staff; and
in 2009 NCPC launched a workplace based training programme which maps the end of life care pathway and helps with the skills available at each stage. This includes communication, advance care planning, assessment, support for carers and importantly support for health and social care staff. For more details access the National Council for Palliative Care website or contact Jenny Thurston at j.thurston@ncpc.org.uk

The work of the group continues and is currently working towards adaptation of the Liverpool Care Pathway for people with neurological conditions and the development of a survey of users and carers around admissions to hospitals and how their neurology needs are met.

Figure 1 Neurological care pathway
download a larger pdf of the pathway (pdf 142kb)

Table 1 Prevalence of symptoms across different conditions

Symptom	MS¹	Cancer²	Heart disease²	Respiratory disease
Pain	68%	35-96%	41-77%	34-77%
Fatigue	80%	32-90%	69-82%	68-80%
Nausea	26%	6-68%	17-48%	?
Constipation	47%	23-65%	38-42%	27-44%
Breathlessness	26%	10-70%	60-88%	90-95%

King's College London MS/palliative care project.
Solano JP, Gomes B, Higginson IJ. A Comparison of Symptom Prevalence in Far Advanced Cancer, AIDS, Heart Disease, Chronic Obstructive Pulmonary Disease and Renal Disease. J Pain Symptom Manag 2006; (31):58-69.

(From MS and Palliative Care, MS Society 2006)

Conclusion

To meet the end of life care needs of people with MS, a coordinated approach is required across neurology, rehabilitation and palliative care with shared learning and models of care. Often the main person, and therefore key worker within this will be the specialist nurse. It is therefore important that nurses feel they have the skills to manage people until the end of life as well as supporting their carers into bereavement, whilst also knowing that there are support structures in place should they themselves need to draw on further support and advice.

References

Addington-Hall J, Fakhoury W, McCarthy M.
Specialist palliative care in nonmalignant disease.
Palliat Med 1998; 12: 417-27.
Addington-Hall JM.
Extending palliative care to chronic conditions.
European Journal of Palliative Care 2005; 12 (2 suppl): 14-17.
Department of Health.
National service framework for long-term neurological conditions.
London: Department of Health; 2005.
National Council for Palliative Care.
National survey of patient activity data for specialist palliative care services.
London: NCPC; 2007.
Multiple Sclerosis Society.
MS and palliative care: a guide for health and social care professionals.
London: MS Society; 2006.
National Council for Palliative Care.
Focus on Neurology: addressing palliative care for people with neurological conditions.
London: NCPC; 2007.
Department of Health.
Common core competences and principles for health and social care workers working with adults at the end of life.
London: Department of Health; 2009.