Reader Response: Neurology Clinicians' Views on Palliative Care Communication: “How do You Frame This?”
Lynne P.Taylor, Neuro-oncologist and Palliative care physician, University of Washington
Submitted May 01, 2021
I read with interest this excellent article by Zehm et al. about palliative care communication in a subspecialty practice of motor neuron disease and dementia.1 I was struck by this sentence: "Unique challenges associated with neurodegenerative diseases include a lack of curative therapies, heterogeneous trajectories, and communication or cognitive impairment."
I think it is important to stress that this is exactly what I would say about our neuro-oncology patient group in a dedicated brain tumor center as well. The article seems to want to split "oncologic" from "non-oncologic" palliative care: "In neurology, many disease-directed therapies are not as burdensome or "toxic" as cancer treatments..." and discuss the importance of considering in conversations with patients and families: "How do you frame this?". While it is true that we have treatments for some primary brain tumors, the treatments are provided in the best tradition of palliative care; to improve quality of life for as long as possible and we always consider the burdens versus the benefits of treatment and use framing in our conversations with our patients.
Lastly, their approach to communication challenges focus on three points that I think are easily generalizable across the entire continuum of neurologic diagnoses: (1) when to begin goals of care conversations, (2) how to support patients and surrogates in decision-making, and (3) how to approach the general unfamiliarity with disease trajectories for patients and families.
All neurologists have a vital role to play in providing generalist palliative care to their patients and could learn from a careful review of this article. For the future of specialist neuro-palliative care, however, I think it is important to focus on the unique challenges that all patients, families (and their physicians) face when dealing with neurologic illness.
Disclosure
The author reports no relevant disclosures. Contact journal@neurology.org for full disclosures.
Reference
Zehm A, Hazeltine AM, Greer JA, et al. Neurology clinicians' views on palliative care communication: "How do you frame this?". Neurol Clin Pract. 2020;10(6):527-534. doi:10.1212/CPJ.0000000000000794
I read with interest this excellent article by Zehm et al. about palliative care communication in a subspecialty practice of motor neuron disease and dementia.1 I was struck by this sentence: "Unique challenges associated with neurodegenerative diseases include a lack of curative therapies, heterogeneous trajectories, and communication or cognitive impairment."
I think it is important to stress that this is exactly what I would say about our neuro-oncology patient group in a dedicated brain tumor center as well. The article seems to want to split "oncologic" from "non-oncologic" palliative care: "In neurology, many disease-directed therapies are not as burdensome or "toxic" as cancer treatments..." and discuss the importance of considering in conversations with patients and families: "How do you frame this?". While it is true that we have treatments for some primary brain tumors, the treatments are provided in the best tradition of palliative care; to improve quality of life for as long as possible and we always consider the burdens versus the benefits of treatment and use framing in our conversations with our patients.
Lastly, their approach to communication challenges focus on three points that I think are easily generalizable across the entire continuum of neurologic diagnoses: (1) when to begin goals of care conversations, (2) how to support patients and surrogates in decision-making, and (3) how to approach the general unfamiliarity with disease trajectories for patients and families.
All neurologists have a vital role to play in providing generalist palliative care to their patients and could learn from a careful review of this article. For the future of specialist neuro-palliative care, however, I think it is important to focus on the unique challenges that all patients, families (and their physicians) face when dealing with neurologic illness.
Disclosure
The author reports no relevant disclosures. Contact journal@neurology.org for full disclosures.
Reference