Navigating the unknown: Palliative care after stroke

Navigating the unknown: Palliative care after stroke

An article written by Natalie Govind, Lecturer University of Technology Sydney

‘How people die remains in the memory of those who live on.’ (Cicely Saunders)

Much is written about living with stroke, but little is known about dying from stroke. The global lifetime risk of stroke is one in four and despite significant advancements in acute stroke management, one-fifth of patients face the reality of mortality within the first 30 days post-stroke and less than 10% receive the palliative care that could significantly impact their quality of life. [1, 2] The trajectory after a severe stroke paints a vivid picture: a sudden decline in functional status, an overwhelming symptom burden, and an undercurrent of prognostic uncertainty. For many, this trajectory leads to profound implications, potentially culminating in mortality, long-term disability, and a compromised quality of life. [3] Additionally, stroke care for this population is influenced by decisions that often need to be made shortly after the event, making them clinically challenging, emotionally demanding and ethically complex.

Many survivors of severe stroke find it challenging to articulate their needs and concerns, which in turn, poses additional challenges to their overall care. This is where a palliative approach steps in, as a vital aspect in the pursuit of augmenting the quality of life for both patients and their families. By pinpointing, pre-empting, and mitigating pain and distress across the realms of the mind, body, and spirit, this approach strives to provide comprehensive support.

To gain a comprehensive grasp of the current landscape of palliative care provided to patients post-stroke, we embarked on a review aimed to describe the palliative care interventions and end-of-life considerations as reported by patients post-stroke and their families. [4] We share key insights of this review here.


Critical shift in perspective

The review underscores a crucial point: palliative and end of life care can be provided independently of a patient's prognosis. A key distinction of palliative care is its ability to transcend prognostic uncertainty. In cases where uncertainty clouds the path forward, the initiation of palliative care should not be delayed. This approach champions early intervention, recognising that time is of the essence in dealing with the aftermath of a sudden, life-altering event like stroke.

 

Breaking the chains of uncertainty

One of the most significant hurdles in severe stroke cases is the cloud of uncertainty that can loom over healthcare professionals. The review emphasises that this uncertainty should never paralyse, but rather spur early initiation of palliative care. This proactive stance not only reshapes the trajectory of care but also empowers patients and their families to confidently navigate the intricate terrain of post-stroke reality.
 

The power of communication: Gateway to access

Effective communication is the cornerstone of accessing palliative care in stroke. This review highlighted that transparent, compassionate conversations between healthcare professionals, patients, and their families are essential. This open dialogue not only demystifies the palliative care process but also ensures that those who stand to benefit from these interventions are identified and supported.
 

Pioneering the way forward: Future research

Looking ahead, the path is clear: we need practical approaches to enhance the delivery of palliative care for post-stroke patients and their families. Future research should focus on refining strategies that optimise quality of life. This systematic review stands as a call to action, underscoring the urgency and importance of this endeavour.

In a world where stroke ranks as the second leading cause of death and a significant contributor to morbidity and disability, the importance of palliative care cannot be overstated. It is time to shift our perspective and recognise that palliative care is not just about a good death, but about promoting a quality life for patients post-stroke and their families.

The union of palliative care and stroke necessitates targeted interventions thoughtfully designed to address the diverse palliative needs of this unique patient population. Through the lenses of both patients and their families, critical questions arise: How can we further alleviate the burden of symptoms and enhance overall care satisfaction? How can we effectively acknowledge prognostic uncertainty, fostering open and honest conversations? In the wake of an acute stroke, where life takes an unexpected turn, a deeper understanding of these challenges is paramount. It is this understanding that will drive the focus of future research, striving to pave the way for more informed, compassionate, and effective care decisions and long-term outcomes. Embracing palliative care isn't just an option; it is a vital aspect of post-stroke recovery deserving of our utmost attention.

 

Authors:

Profile picture of Deb Van Gaans
Natalie Govind, RN BN (Hons) Grad Cert ICU Nursing

NHMRC postgraduate scholarship recipient, Lecturer

University of Technology Sydney




References

  1. Roberts SE, Goldacre MJ. Case fatality rates after admission to hospital with stroke: Linked database study. BMJ 2003;326:193;194.
  2. Bray BD, Paley L, Hoffman A, James M, Gompertz P, Wolfe CDA, Hemingway H, Rudd AG. Socioeconomic disparities in first stroke incidence, quality of care, and survival: A nationwide registry-based cohort study of 44 million adults in England. Lancet Public Health 2018;3:e185–e193.
  3. Creutzfeldt CJ, Longstreth WT, Holloway RG. Predicting decline and survival in severe acute brain injury: The fourth trajectory. BMJ 2015;351:h3904.
  4. Govind N, Ferguson C, Phillips JL, Hickman L. Palliative care interventions and end-of-life care as reported by patients; post-stroke and their families: a systematic review. Eur J Cardiovasc Nurs. 2023 Jul 19;22(5):445-453.

 

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1 comments on article "Navigating the unknown: Palliative care after stroke"

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Melanie French

Excellent article raising a very valid topic.

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The views and opinions expressed in Palliative Perspectives are those of the authors and are not necessarily supported by CareSearch, Flinders University and/or the Australian Government Department of Health and Aged Care.