Palliative care in MS – how is this evolving?

Palliative care in MS – how is this evolving?


Palliative care in MS – how is this evolving?

There is a misconception that palliative care is only relevant and available when a person is nearing the end of their life. Although it can include end of life care, palliative care is much broader than this. Palliative care is defined as specialised medical care for people living with a serious illness. Practice guidelines recommend the early introduction of palliative care, ideally at the time of diagnosis of the condition1. People with MS are typically not familiar with palliative care, and even if they are, they rarely consider it for themselves as many believe it is only hospice care — measures taken at the end of life to ease suffering and maximize comfort2.

With serious chronic conditions, such as MS, palliative care can begin immediately post-diagnosis with person-centred care planning, and continue through intensive disease treatment and timely symptom management, culminating with hospice services for terminal care and bereavement for the family. Thus, palliative management of symptoms and psychosocial needs can occur alongside life-prolonging or disease modifying treatments3.

In palliative care, a team of providers work together to develop a plan of care that addresses problems in multiple domains affecting the physical, psychological, social, and spiritual well-being of the affected person and his or her family4. The palliative care team may include physicians, nurses, home health aides, nurse practitioners, social workers, chaplains and spiritual counsellors, psychiatrists and psychologists, pharmacists, nutritionists, and physical, occupational, speech, massage, recreation and respiratory therapists. 

Palliative care services may take the form of: 

palliative care consultations during a hospital in-patient stay
in-patient care on a palliative care unit
home-based care in coordination with a certified home health agency
community-based care in an out-patient palliative care clinic or during in-home visits by a physician or nurse practitioner
hospice care in a home, in-patient hospice unit, nursing home, or adult family home 

Palliative care for MS can be differentiated from traditional MS care by its multi-faceted approach, providing a tool kit for MS clinical care which includes not only traditional disease-model medical care but also other goals and objectives (see Table 1)5-8.

Table 1: Palliative care objectives for people with MS

  • The relief of pain and management of other stressor symptoms
  • Facilitating communication, decision-making and advance care planning
  • Promotion of the concept of life and death as something natural
  • Promotion of respect for the natural course of death
  • Integration of psychological and spiritual aspects into patient care
  • Preservation of an active life for as long as possible, providing opportunities for personal growth throughout the entire disease course
  • Advocating for the information and resource needs of people with MS and their families 
  • Improvement of quality of life positively influencing the course of disease and promoting the discussion of advance care planning with the person and his/her family 
  • Setting goals based on the values of the patient and what is possible to achieve 
  • Using a team approach to develop a coordinated plan of care that addresses the unique needs of the individual with MS and his or her family and significant others, drawing upon the expertise of care providers from multiple disciplines 
  • Determining medical interventions the person may or may not want, including resuscitation, intubation, dialysis, antibiotics, and artificial nutrition and hydration 
  • Remaining involved regardless of the stage of illness or care venue 

Palliative care specialists are often termed “good stewards of resources,” specifically because of the time they spend identifying various systems, products and venues of care. They promote communication between the various care providers on behalf of the patient and family. Short-term, interdisciplinary palliative care may improve the management of complex symptoms, reduce caregiver burden, and decrease the cost of care by minimising the use of primary care and hospital services9.

Incorporating palliative care techniques into MS clinical care should ultimately increase quality of life for people with MS and their care partners. Clinicians should consider using palliative care techniques in any phase of MS clinical care, beginning at the time of diagnosis.

Sources | Further reading

  1. National Consensus Project for Quality Palliative Care. Clinical Practice Guidelines for Quality Palliative Care, Third ed. 2013.
  2. Golla H, Galushko M, Pfaff H, Voltz R. Multiple sclerosis and palliative care-perceptions of severely affected multiple sclerosis patients and their health professionals: a qualitative study. BMC Palliat Care. 2014;13:1–11.
  3.  Gruenewald D, Brodkey M, Reitman NC, Del Bene M. Opening doors: the palliative care continuum in multiple sclerosis. National MS Society.
  4. Gade G, Venohr I, Conner D, et al. Impact of an inpatient palliative care team: a randomized controlled trial. J Palliat Med. 2008;11:180–90.
  5. Haun MW, Estel S, Rücker G, et al. Early palliative care for adults with advanced cancer. Cochrane Database of Systematic Reviews 2017, Issue 6.
  6.  Hui D, Cruz M, Mori M, et al. Concepts and definitions for “supportive care,” “best supportive care,” “palliative care,” and “hospice care” in the published literature, dictionaries, and textbooks. Supportive Care in Cancer 2013;21:659‐8.
  7.  WHOQOL Group. The World Health Organization quality of life assessment (WHOQOL): development and general psychometric properties. Social Science & Medicine 1998;46:1569‐85.
  8. World Health Organization. Palliative care.‐room/fact‐sheets/detail/palliative‐care
  9. Higginson IJ, McCrone P, Hart SR, et al. Is short-term palliative care cost-effective in multiple sclerosis? A randomized phase II trial. J Pain Symptom Manage. 2009;38:816–826.
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