What if we applied the palliative care approach during the COVID-19 pandemic and beyond
A year ago when the pandemic was first unfolding, I became worried about how to counsel and support for our persons with Parkinson’s and their families. I wanted to help them to prepare for the uncertainty of what was happening before our eyes. One year later, as vaccines are being distributed throughout the world and the rates of infection numbers seem to be declining, I am hopeful that we may be returning to some new baseline of normalcy. I am still struck by how a paper that Christina Vaughan MD and I published last year in Parkinsonism and Related Disorders still has tremendous relevance at this time and beyond. Here is some of the background, the questions that we posed and the updated answers….
Who is Dr. Vaughan?
Dr. Christina Vaughan MD
Christina Vaughan, MD, MHS is Associate Professor of Neurology and Medicine at the University of Colorado, Anschutz Medical Center where she began her post in August, 2017. She is now the Chief of the Section of Neuro-palliative care and spends her time in clinic and attending the inpatient Palliative care service. In clinic, she sees persons with chronic life-limiting neurologic conditions and their families, and works with an inter-professional team. She began her career with a Bachelor of Science in Neuroscience from the University of Rochester. She then completed a pre-doctoral fellowship at the National Institutes of Neurological Disorders and Stroke. While at the NINDS she used the rat model of Parkinson's disease (PD) to evaluate the effects of different drugs on dyskinesia. Upon completion of the fellowship she pursued a masters degree in mental health from the Johns Hopkins School of Public Health. She then went to medical school and graduated from the State University of NY at Buffalo, in her home town. She completed Neurology residency and served as Chief Resident at the University of Pittsburgh Medical Center and then went to Chicago to complete a 2-year fellowship in Movement Disorders at Rush University Medical Center. She then worked as a movement disorders specialist at the Medical University of South Carolina for 4 years. During this time she had the opportunity to serve as an Associate Program Director for the neurology residents and fellowship director for the Movement Disorders program. After several years of practice, she decided to broaden her scope of care and went back to training for one more year and completed a fellowship in Palliative Medicine/Hospice in San Diego, CA. Dr. Vaughan considered this training one of the highlights of her career and thoroughly enjoyed learning more about comprehensive care of patients and their families.
The palliative care approach
The palliative care approach to neurologic disease emphasizes relief of physical, emotional, and spiritual suffering. The COVID-19 pandemic has certainly magnified suffering: through physical illness and death, fears and anxieties, and financial as well as social instability. There are distinct concerns around the increased vulnerability of those living with chronic illnesses like Parkinson disease (PD). Stress-related psychiatric symptoms such as anxiety and depression were already quite common in PD, occurring in up to 60% of patients in the pre-pandemic era [1]. There have been concerns about the “what-ifs” among persons with PD (PWP) and their families. The pandemic has presented an important opportunity to discuss goals of care, and to revisit or establish advance care plans specifically related to COVID-19 or a similar decline in health. Some clinicians have found it easier to discuss these topics framed within the pandemic which has put us all at risk highlighting that documentation of wishes is the best way to ensure appropriate care is delivered and people are protected from interventions that they would not want. Communication about care preferences is a critical component of palliative care, and expertise in handling difficult conversations, responding to emotion, and discussing patients’ wishes has never been more important. The strategy of simultaneously hoping for the best while preparing for the worst is a commonly used approach in palliative care which frames the discussion to include both positive and negative paths [2]. Establishing a patient’s goals of care is derived from in-depth conversations about his/her life before PD, with identification of values and what is most important and assessment of their perception of their disease. Only through such conversations can the healthcare providers really understand what the “best” case scenario is for that individual. .
1. What if a person with moderate to advanced PD
develops COVID-19 or a serious acute
illness?
PWP may be at an increased risk for higher risk of death or other bad outcome from an infection like COVID-19 given their older age, higher male predominance and possible co-morbidities such as swallow dysfunction or lack mobility [3]. PWP are already more prone to pneumonias and infections which can cause sudden changes in behavior and motor function, increasing the risk of complications significantly. If requiring hospitalization, then several possible trajectories could be presented: (1) to pursue aggressive medical interventions such as intubation (placing a breathing tube) and mechanical ventilation (assistance with breathing on a ventilator machine); (2) to pursue all therapies short of intubation to include only non-invasive ventilation ( not placing a breathing tube) and respiratory therapies; (3) to consider a time-limited trial of aggressive therapies with designated conditions under which such life-support would be withdrawn; and (4) to forego hospitalization and transition to hospice to focus on comfort and not escalate medical care with hospitalization. Through a skillful goals of care conversation, clinicians can elicit patients’ values and goals to ensure the care they receive is in alignment with their values and this is important to consider prior to discussing code status. If the patient is incapacitated, then the family is relied upon to “be the patient’s voice,” and to imagine what the patient would say if he/she was witnessing the current medical situation. . Several online resources can guide these advance care planning discussions such as:
2. What if the caregiver of a person with PD
develops COVID-19 or some other serious illness?
The need for social distancing has put a tremendous strain on caregivers who were already at risk for burning out, being isolated and getting sick themselves. Respite and household help has been on hold, jeopardizing the caregiver’s ability to focus on selfcare. This presents an opportunity to address the need for a care plan for PWP in the event that a caregiver is ill or unable to provide care. When discussing advance care planning for the person with PD it should be seamless to continue the conversation as it pertains to the caregiver, ensuring they too have clear documentation of healthcare proxy and an advance care plan (such as a living will). This can then lead to the preparation of a plan to include where the PWP would reside if the caregiver is hospitalized (at home with family or paid caregiver, or in a care facility). Further, if the caregiver is ill but does not require hospitalization, plans should include how to isolate, yet still care for the PWP either in the home or elsewhere.
The anxiety around developing COVID-19 or a similar illness as a caregiver or caring for a PWP who develops COVID-19 can be difficult to address, and reaching out to others in the PD community may help to formulate a plan:
• A growing virtual PD support group during the pandemic: https://www.pmdalliance.org/social-distancing-coronavirus/
• Ways to stay connected during the pandemic: https://www.apdaparkinson.org/article/online-parkinsons-disease-resources/
• Specific resources for caregivers of PWP: https://www.caregiver.org/parkinsons-disease-caregiving;
Now more than ever there are many options for professional counseling and psychotherapy online.
3. What if a PWP needs to be evaluated in the
emergency department (ED)?
The main reasons for hospitalization among PWP are infections, worsening motor features, falls/fractures, cardiovascular co-morbidities, neuropsychiatric and gastrointestinal complications [4].
This list may help caregivers know what to look for when considering contacting paramedics: https://www.rarecaregivers.org/crisis-symptom-reporting-guide.
If going to the hospital, the Parkinson’s Foundation has a COVID-19 Preparedness Fact Sheet which helps patients/families to advocate for PD-specific care. It highlights the importance of strict timing of medications, continuation of levodopa for as long as possible, avoidance of contraindicated medications such as most antipsychotics (medications used to treat hallucination and delusions) and anti-vomiting agents (except quetiapine, clozapine, pimavanserin and ondansetron). A documented healthcare proxy and advance directive are very important to accompany the patient to the hospital. The PWP is often alone after entering the ED or throughout their hospitalization due to visitor restrictions during the pandemic, so these documents have been critical if the PWP cannot communicate for him/herself.
4. What if a PWP needs to transition to a higher
level of care?
If this a non-urgent situation, a telehealth or live visit with the neurologist or primary care provider may be appropriate to assess the decline in symptoms and to discuss options for either additional support at home or transitioning to a care facility. If available, the palliative care social worker can aid in clarifying the options for additional help at home or provide a list of possible care facilities. Either due to increasing caregiver fatigue or due to patient’s overall clinical worsening, the transfer from home to a facility may be necessary. COVID-19 can spread rapidly after introduction into skilled nursing facilities, resulting in substantial morbidity and mortality. There have been aggressive efforts toward visitor restrictions and through active screening of personnel who enter a facility for fever and symptoms of illness. Transfer to a facility has meant that the PWP may not have visitors and will be quite isolated. Using video conferencing, residents in facilities can connect with loved ones which may also add an additional layer of stress due to challenges with technology. If possible, facilitating extra help at home may preserve quality of life for the PWP and caregiver. Community--based palliative care programs may be of further help to ease the transition from home to a facility.
COVID-19 has led to limitation of elective and preventative care that is usually delivered through in-person visits. Clinicians are modifying standard neurological care using telehealth but many procedures such as administration of botulinum toxin, performing Deep Brain Surgeries (DBS) and adjusting DBS settings have been postponed which may have resulted in an increase in PD symptom burden. One emergency that should be avoided is the DBS battery approaching end of life resulting in “DBS withdrawal syndrome” [5].
5. What if a patient with PD approaches end of
life?
Hospice should be considered for patients who have end-stage PD and whose goals are aligned with hospice care. Often helpful for the clinician in determining hospice eligibility is the “surprise question”: “Would I be surprised if this patient died in the next 6 months?”, and if not, then a referral to hospice is reasonable [7]. Shared decision-making tools regarding the appropriateness of hospice care in COVID-19 positive patients can be useful: https://www.nhpco.org/wp-content/uploads/COVID-19-Shared-Decision-Making-Tool.pdf. Hospice organizations have remained functional during the pandemic although the delivery methods of certain services may have been modified for safety purposes. Telehealth has allowed hospices to remain responsive to the needs of patients and caregivers while reducing potential viral exposure to patients and hospice staff. Patients and families have 24-hour access to hospice services seven days a week and medications, durable medical equipment, and support services are provided as needed.
In our experience, uncertainty amongst PWP and their families has been a common theme compounding the distress caused by the pandemic. We have found that proactively approaching the “what-ifs” of possible scenarios in the face of uncertainty allows for high quality discussions about goals of care and advance care planning, and also alleviates much of the fear patients and families have about the unknown. To date, PD itself does not seem to predispose patients to getting COVID-19 and many PWP who have gotten COVID-19 have had good outcomes although some have gotten very sick and have passed away. This palliative approach of hoping for the best but planning for the worst draws upon skills that many providers already possess. It can facilitate decision making in alignment with the patient’s goals and values and may decrease torment, especially in the midst of a pandemic and beyond.
To read more books and articles by Michael S. Okun MD check Twitter @MichaelOkun and these websites with blogs and information on his books and http://parkinsonsecrets.com/ #Livingwith Parkinson’s #EndingPD #Parkinsonsecrets #LessonsFromTheBedside
He also serves as the Medical Advisor for the Parkinson’s Foundation.
To see more on Dr. Indu Subramanian she does live interviews of experts in Parkinson’s for the PMD Alliance.
References
[1] Schapira, A.H.V., K.R. Chaudhuri, and P. Jenner, Non-motor features of Parkinson disease. Nat Rev Neurosci, 2017. 18(7): p. 435-450. DOI: 10.1038/nrn.2017.91
[2] Back, A.L., R.M. Arnold, and T.E. Quill, Hope for the best, and prepare for the worst. Ann Intern Med, 2003. 138(5): p. 439-43. DOI: 10.7326/0003-4819-138-5-200303040-00028
[3] Helmich, R.C. and B.R. Bloem, The Impact of the COVID-19 Pandemic on Parkinson's Disease: Hidden Sorrows and Emerging Opportunities. J Parkinsons Dis, 2020. 10(2): p. 351-354. DOI: 10.3233/JPD-202038
[4] Okunoye, O., et al., Factors associated with hospitalisation among people with Parkinson's disease - A systematic review and meta-analysis. Parkinsonism Relat Disord, 2020. 71: p. 66-72. DOI: 10.1016/j.parkreldis.2020.02.018
[5] Miocinovic, S., et al., Recommendations for Deep Brain Stimulation Device Management During a Pandemic. J Parkinsons Dis, 2020. DOI: 10.3233/JPD-202072
[6] Downar, J., et al., The "surprise question" for predicting death in seriously ill patients: a systematic review and meta-analysis. CMAJ, 2017. 189(13): p. E484-E493. DOI: 10.1503/cmaj.160775