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Invited Commentary
August 28, 2020

Short-term Palliative Care for Advanced Neurologic Disease

Author Affiliations
  • 1Department of Neurology, Massachusetts General Hospital, Boston
  • 2Department of Medicine, Division of Palliative Care, Massachusetts General Hospital, Boston
JAMA Netw Open. 2020;3(8):e2015247. doi:10.1001/jamanetworkopen.2020.15247

The benefits of a palliative care approach to patients with chronic and progressive neurologic conditions has garnered increasing interest over recent years. In the article by Gao et al,1 the authors describe their work investigating the effectiveness of a short term integrated palliative care (SIPC) intervention for patients with advanced neurologic disease. Patients with Parkinson disease, multiple sclerosis, multiple system atrophy, progressive supranuclear palsy, and amyotrophic lateral sclerosis were recruited along with their caregivers to participate in a study across 7 hospitals in the United Kingdom. Patients were randomized to receive SIPC vs standard care for 12 weeks followed by the standard care model. A diverse set of outcome measures was studied including changes in physical symptoms as measured by the Integrated Palliative Care Outcome Scale for neurologic conditions (IPOS Neuro-S8), psychological stress, caregiver burden, costs, and quality of life. Additionally, the study included a smaller qualitative analysis of patients and caregivers to assess satisfaction with the intervention and concordance with the quantitative results. No significant difference in physical symptoms was seen between the intervention and control group. The SIPC group saw a significant reduction in symptom burden over the 12-week study period; reduction was also seen to a lesser degree in the control group. The authors found SIPC to be less costly than standard care to improve palliative care symptoms but this difference was not statistically significant, and there was no difference in adverse events or survival between the groups. Qualitative analysis suggested benefits of SIPC including themes of “adapting to losses and building resilience,” “attending to function, deficits and maintaining stability,” and “enabling carers to care”.

By definition, palliative care is person-centered care that is delivered by a team of health care professionals. In neurology, disease prognosis, associated symptoms, and functional outcomes can vary widely between neurologic diseases and even between 2 patients with the same disease.2 This variance creates a challenge for evidence-based neuropalliative care implementation and outcomes research. Randomized clinical trials are few, and most studies are single-center. Mixed methods research has been one strategy suggested to enhance palliative care research,3 and in Gao et al, this approach helps to provide a more comprehensive understanding of the intervention. The study by Gao et al attempts to (1) assess a randomized palliative care intervention across multiple health centers; (2) use the same intervention in multiple neurologic diseases; and (3) incorporate a combination of quantitative and qualitative analyses examining a broad array of outcomes, including symptoms, satisfaction, and cost.

While efficacy of an intervention is often the focus of study, in a nascent field such as neuropalliative care, the refining of the intervention itself is equally important. A 2017 Neuropalliative Care Summit identified the need for process-oriented research to help understand which palliative care tools and interventions could be disseminated among varying health systems.4 Although Gao and colleagues note possible variability in how the SIPC was used across their health centers, the ability to successfully implement a standardized SIPC across 7 different facilities may help to provide a guide for future studies. Similarly, the authors did not find any cost increase with the intervention, suggesting that palliative care may be implemented at a systems level without cost repercussions, and, potentially, with cost benefit.

The measure for effective palliative care remains uncertain. Further study is needed to examine how the duration and timing of a palliative care intervention affects outcomes. In Gao et al, a brief intervention late in the course of disease (with the exception of ALS) was selected. Palliative care intervention studies in oncology have taken a different approach, with some research suggesting that early integration of palliative care is beneficial.5 In neuropalliative care, it remains unclear if a longer or earlier intervention affects efficacy. While early palliative care has been beneficial in select small studies in neurology, later involvement has been postulated to be more appropriate for diseases with a long course.6

The authors note that the heterogeneity of their patient population was a factor in interpreting the results of the intervention. This is an important observation and suggests that in a field as varied in scope as neurology, palliative care interventions should be designed with a specific disease or specific disease trajectory in mind. Four primary trajectories in neurologic illness have been previously described.7 While Parkinson disease has a slower progressive course, diseases such as amyotrophic lateral sclerosis have a more abrupt functional course, and thus may require different palliative care resources and approaches. Tailoring palliative care, and the outcomes measured, to the overarching disease trajectory may be one strategy to enhance efficacy, but further study is necessary.6

As the field of neuropalliative care continues to grow, we will need more high quality randomized clinical trials and qualitative research to help in understanding when and how palliative care can best benefit patients with neurologic conditions and their caregivers. Multicenter collaboration, as demonstrated in this study, will be essential for understanding how a palliative care intervention can be implemented broadly. Refinement of neuropalliative outcome measures will also be important in assessing utility. By sharing the successes and setbacks in our implementation strategies, we can continue to move the field toward the ultimate goal of improving quality of life for patients with chronic and progressive neurologic disease.

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Article Information

Published: August 28, 2020. doi:10.1001/jamanetworkopen.2020.15247

Open Access: This is an open access article distributed under the terms of the CC-BY License. © 2020 Brizzi KT. JAMA Network Open.

Corresponding Author: Kate T. Brizzi, MD, Mass General Hospital, WACC 8th Floor, 55 Fruit Street, Boston, MA 02114 (kbrizzi@partners.org).

Conflict of Interest Disclosures: None reported.

Gao  W, Wilson  R, Hepgul  N,  et al; OPTCARE Neuro Trial Investigators.  Effect of short-term integrated palliative care on patient-reported outcomes among patients severely affected with long-term neurological conditions: a randomized clinical trial.   JAMA Netw Open. 2020;3(8):e2015061. doi:10.1001/jamanetworkopen.2020.15061Google Scholar
Gofton  TE, Chum  M, Schulz  V, Gofton  BT, Sarpal  A, Watling  C.  Challenges facing palliative neurology practice: A qualitative analysis.   J Neurol Sci. 2018;385:225-231. doi:10.1016/j.jns.2017.12.008 PubMedGoogle ScholarCrossref
Farquhar  MC, Ewing  G, Booth  S.  Using mixed methods to develop and evaluate complex interventions in palliative care research.   Palliat Med. 2011;25(8):748-757. doi:10.1177/0269216311417919 PubMedGoogle ScholarCrossref
Creutzfeldt  CJ, Kluger  B, Kelly  AG,  et al.  Neuropalliative care: Priorities to move the field forward.   Neurology. 2018;91(5):217-226. doi:10.1212/WNL.0000000000005916 PubMedGoogle ScholarCrossref
Temel  JS, Greer  JA, Muzikansky  A,  et al.  Early palliative care for patients with metastatic non-small-cell lung cancer.   N Engl J Med. 2010;363(8):733-742. doi:10.1056/NEJMoa1000678 PubMedGoogle ScholarCrossref
Oliver  DJ, Borasio  GD, Caraceni  A,  et al.  A consensus review on the development of palliative care for patients with chronic and progressive neurological disease.   Eur J Neurol. 2016;23(1):30-38. doi:10.1111/ene.12889 PubMedGoogle ScholarCrossref
Creutzfeldt  CJ, Longstreth  WT, Holloway  RG.  Predicting decline and survival in severe acute brain injury: the fourth trajectory.   BMJ. 2015;351:h3904. doi:10.1136/bmj.h3904 PubMedGoogle ScholarCrossref
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    1 Comment for this article
    Intervention lacked rehabilitation
    Derick Wade, MA, MB, BChir, MD, FRCP | Faculty of Health & Life Sciences, Oxford Brookes University, Gypsy lane Oxford OX3 0BP.
    Rehabilitation and palliative medicine share a biopsychosocial, person-centred approach.

    Rehabilitation interventions:
    - Are centred on people with persisting disability, and their families
    and have the goal of ensuring a ‘good life’
    - Maximising autonomy
    - Optimising a person’s social participation
    - Minimising a person’s somatic and emotional distress
    - Minimising distress of/strain on family/friend

    Palliative interventions are:
    - Are centred on people approaching the end of their life, and their families
    and have the goal of ensuring a ‘good death’
    - Optimising a person's social participation
    - Minimising person’s somatic and emotional distress
    - Minimising distress of/strain
    on family/friends

    The patients seen were not all particularly close to the end of their life. Under those circumstances, interventions should expand beyond a strong focus on symptoms control (which is of great importance and may not always be done well by rehabilitation specialists), and should also focus on improving autonomy though:
    - ensuring provision of any equipment and adaptations needed, such as communication aids, environmental control systems, specialist wheelchairs
    - ensuring families and carers are taught how to facilitate a patient's own control over activities
    - teaching the patients (usually) adaptive techniques to circumvent their losses

    Patients with motor neurone disease, disabling multiple sclerosis, and Parkinson's disease have all been found to benefit from rehabilitation (see Wade, D. T. (2020). What is rehabilitation? An empirical investigation leading to an evidence-based description. Clinical Rehabilitation, 34(5), 571–583. https://doi.org/10.1177/0269215520905112) and it is likely that patients with multi-system atrophy and similar conditions may gain benefit too.

    A trial is needed that includes an equal emphasis on specialist rehabilitation and on specialist palliative care.