Caveats and Practical Tips for Delivering a Parkinson's Disease Diagnosis
By Indu Subramanian M.D.
I was recently inspired to write a paper about delivering the diagnosis of Parkinson’s disease. ‘Words matter’ and the words delivered at the moment of diagnosis will affect people for many years to come. This month’s blog is dedicated to ‘delivering the diagnosis’ and will address the use of ‘compassion and hope,’ when delivering a Parkinson’s disease diagnosis. The blog is based both on a paper I co-wrote, but also on an expanding literature on this crucial topic.
This picture by our website artist Jonny Acheson really captures what it must be like to both receive the diagnosis of Parkinson’s disease, but also to try to ‘navigate the labyrinth.’ As one caregiver commented, a labyrinth has a set path in and a set path out, which facilitates the act of ‘quietly meditating’ on the journey. The idea of the labyrinth is also that anxiety is low (or nonexistent) as the path is ‘prescribed’ and set in a place alleviating the potential worries about ‘getting lost.’
The ‘lasting memory’ of a Parkinson’s diagnosis
Many people have described to me the emotional impact and the vivid memory of ‘that day.’ As clinicians, we have stressful demands on our time and our days are busy, however it is critical that we prioritize ‘this diagnosis moment’ whenever it may occur. We should attempt to engage other members of the healthcare team to lend expertise and support. A potential path forward for us in delivering the diagnosis will be to learn from the experiences of others; good and bad. When we wrote our paper on this topic, one of the most powerful sections was the patient voices which were provided by Kuhan and Soania Mathur and others. Throughout the blog I will share the ‘patient voices’ which I mark in italics.
“10 years on, I can still recall how the clouds looked that fatal day. I can describe the sounds of the traffic. The smell in the air… I remember the chilling silence of the waiting room too. Then I remember the look in her eyes.. and most of all I remember the exact words she used-‘You’re exhibiting symptoms of Parkinsonism’…. So scripted. So rehearsed in the words she used. Like it had been taught from a handbook in year one of movement disorders specialist school. Like she had said it a 100 times before.”
What are the ways ‘giving a diagnosis of Parkinson’s disease’ can go off the rails? Check out our new paper on the topic.
Why should delivering the diagnosis of Parkinson’s Disease be so complicated?
There are many factors which can render a diagnosis of Parkinson’s tricky. These factors include:
1. Delays in diagnosis and care: 30% of persons have waited more than a year to to ‘see a doctor’ and some have reported their symptoms for ~10 years prior to that ‘moment of diagnosis.’
2. Diagnostic Accuracy at Presentation: Even if you are evaluated by a movement disorders specialist, the diagnostic accuracy following the initial visit is only about 80%. To date, there does not exist a 100% accurate blood test or imaging study which can diagnose Parkinson’s disease. Delays in diagnosis are more common in persons with Parkinson’s who present without tremor. Also, some person with Parkinson’s may have more of a ‘walking’ rather than a shaking presentation. About 7% of persons with Parkinson’s are told ‘there is nothing wrong’ during their first visit to a specialist. Data has shown that missing or delaying the diagnosis is more common in women, younger people, racially ‘minoritized’ populations and in people who reside in rural areas.
3. Under-recognition of Non-motor Symptoms and Mental Health Symptoms: Some persons with Parkinson’s will present with non-motor symptoms or with mental health challenges, including anxiety and depression. Some clinicians may not be aware that such symptoms are commonly part of Parkinson’s disease. Since Parkinson’s disease is most commonly characterized by its motor symptoms and because medical trainees are usually taught about only those characteristics, there is a ‘global under-recognition’ and this impacts diagnosis and treatment.
“I get that the diagnosis discussion, much like the condition itself, is a balancing act (too much information would have been overwhelming, too little would have been unhelpful) but in a way, if I was told more about the array of symptoms at that point, I think I would have taken some comfort. Why? Purely because I had been exhibiting many of symptoms like anxiety, low mood, fatigue, low blood pressure, constipation, sleep issues etc. for many years. Yes the future was uncertain but here was an opportunity to answer questions about the past and present. Years later when I learnt more about these ‘hidden’ symptoms, it was a eureka moment. Everything started to make sense. I wish I had that opportunity on ‘D-day’ itself.”
4. Portrayal of the “typical” Parkinson’s disease person: Parkinson’s disease is a diagnosis which has the potential to be packaged with a good bit of ‘stigma.’ Society pictures the ‘typical’ person with Parkinson’s disease as an older white man, drooling and hunched over and of course ‘he’ must be using a walker or wheelchair. This stereotype has propagated misconceptions especially in the newly diagnosed persons with Parkinson’s. Thus it is common for folks to assume that Parkinson’s disease occurs solely in ‘old people ‘ or alternatively ‘only in white men.’
“Looking back, it's become clear that I experienced three unintended biases that led to a year-long delay in making the diagnosis: An age bias, a race bias and a symptom bias. Collectively, I didn’t fit the bill of the Parkinson’s stereotype. Ironically if the dots were connected and my early non motor symptoms were taken into account... I was the textbook definition of a person with Parkinson’s disease.”
It is critical to understand the path from health to dependence with any disease and especially the path one may follow in Parkinson’s disease. This path is nicely summarized in this figure by Read and colleagues.
What are the implications of a diagnosis of Parkinson’s disease? Read, J., et al., Transitions and challenges for people with Parkinson's and their family members: A qualitative study. PLoS One, 2022. 17(7): p. e0268588.
5. Challenges in Acceptance of a Diagnosis: A number of studies have revealed that ‘accepting the Parkinson’s disease diagnosis’ is challenging and acceptance results in significant ‘life disruption.’ The person with Parkinson’s will need to be equipped with and ready to deploy coping strategies. These strategies will be necessary to stabilize the relationship to the external environment, inclusive of family, friends, society and work. In addition, the coping strategies also serve to redefine the concept of ‘self.’ Some persons with Parkinson’s disease have described the moment of a diagnosis as a ‘traumatic event.’ That diagnosis moment has been compared by many persons with Parkinson’s as similar to the loss of a loved one and the consequent ensuing stages of grief.
Commonly a person with Parkinson’s will experience many negative reactions (see the word cloud below). These may include ‘denial’ and these reactions may (unfortunately) lead to failure to seek care. Another reaction is to avoid the care team following diagnosis, or to ‘put off’ treatments which may be vital to daily functioning.
The positive reactions to a diagnosis of Parkinson’s disease are also possible; such as post-traumatic growth. These positive reactions, when present, usually arise later in the disease course and are rarely observed in the early post-diagnosis period.
This word cloud summarizes many of the common reactions to a diagnosis of Parkinson’s disease. This is from our recent article in Parkinsonism and Related Disorders.
6. Uncertainty about the Future: The lived experience of Parkinson’s disease should be explained as different and unpredictable, especially for any individual. Therefore, prognostication, especially early in the disease course should be viewed as ‘close to impossible.’ This uncertainty and lack of control over the future can be unsettling. This may lead to ‘catastrophizing,’ which commonly results in symptoms such as anxiety, demoralization and depression. Finally, the uncertainty may be worsened by comparing oneself to another person with Parkinson’s disease.
“Everyone’s Parkinson’s journey is different – the message needs to be hammered home from day one to resist the human temptation to compare with others.”
“I was left disillusioned. I felt nobody could give me straight answers. Trust in the medical profession was somewhat eroded. I think that’s partly the reason it took me several years before I started participating in research and clinical trials.”
7. Stigma: Stigma in Parkinson’s disease is real and it is higher in younger persons, women, racially ‘minoritized’ people and in LGBTQ populations.
Self-stigma is common: Some persons with Parkinson’s disease describe shame and embarrassment following their diagnosis. These folks may hide the diagnosis, which may trigger feelings of guilt, isolation and also avoidance of social interactions. Women in particular have described a negative self-image, especially on the topic of ‘inability to perform care-giving and domestic duties.’ The loneliness and isolation created from stigma commonly leads to depression and anxiety. Depression and anxiety is also common in care-partners and caregivers.
“The isolation, the anger, the confusion, the sorrow, the mistrust, the denial, all made worse and prolonged because of that traumatic period. I became one of the silent majority in the PD community, who shut off from the world for many years.”
Stigma can lead a person with Parkinson’s disease to transform from thriving into hiding. Persons may be filled with a fear of discrimination. Since society commonly visibly identifies with the most severely affected Parkinson’s cases this further propagates the stigma.
8. False Beliefs: There are many false beliefs contributing to Parkinson’s disease stigma. In some regions of Africa for example, Parkinson’s disease symptoms have been attributed to ‘witchcraft or curses.’ Another misconception in other regions of the world is that the person with Parkinson’s is a drug abuser or is intoxicated. Thus, there can be a strong sense in the person of devaluation and negative assumptions and thus a ‘perceived stigma.’ Additionally, the person with Parkinson’s may fear negative reactions when ‘exposing’ the diagnosis. This stigma leads to worse self-esteem, to depression, to anxiety and can also lead to avoidance of healthcare.
Communication of the Diagnosis
In a recent survey, ~30% of persons were ‘given’ the diagnosis of Parkinson’s disease during their first meeting with a doctor or clinician. Overall ~50% described a lack of sensitivity when the diagnosis was delivered, and 12% expressed that there was not enough time to discuss the diagnosis. Further, ~28% felt they were unable to ask questions at that visit, and 50% reported there was no information shared on non-pharmacological approaches, such as physiotherapy or exercise. One important take home point from this data was that ‘the initial encounter sets the stage’ for the coming days and years, and clinicians should be trained and encouraged to ‘do better.’
This 2018 article revealed shocking information on person experiences when receiving a diagnosis of Parkinson’s disease.
Schrag, A., et al., Patient experiences of receiving a diagnosis of Parkinson's disease. J Neurol, 2018. 265(5): p. 1151-1157.
It should be appreciated that it is common to not ‘know what to ask’ in the early stage(s) of Parkinson’s, particularly just after receiving a diagnosis. Therefore a clinician and the team should serve to ‘guide the person through this process’ by providing the critical information for understanding both the disease and course ahead.
“It wasn’t that I didn’t have time to ask questions at the initial consultation, I was still processing, I was in shock. That vacuum was subsequently filled by Dr Google which ultimately was to my detriment.”
Finding the Right Words
One recent message from the literature on delivering a diagnosis of Parkinson’s disease is that using words such as the ‘honeymoon period,’ may underestimate the true burden of the disease. Also, use of some words may be considered as ‘patronizing’ and may not be well received. Thus, there needs to be a balance between ‘truth telling’ and ‘offering hope.’
We know that most persons with Parkinson’s desire a patient-centered approach. They yearn for guidance on self-care regimens, wellness and lifestyle options. Importantly, most people desire ‘vetted resources’ and not ‘one persons approach.’
Most persons with Parkinson’s would like to obtain support for themselves and for their families. This type of support can help them to feel valued and accepted. The hope of most persons with Parkinson’s is to communicate openly. Persons with Parkinson’s are hopeful that their healthcare team will value both their quality of life and their relationships.
Persons with Parkinson’s seek practical tips beyond just drugs; tips that can help them navigate each day. They desire a solution that will address where they are with technology, language, financial resources and address culture(s) they ‘live in.’
Persons with Parkinson’s are helped when they can see a representation of other people who ‘look like them.’
Some folks love receiving all the information at the first visit while others prefer a different speed. Some may for example, desire that the flow of information parallels challenges; as they emerge.
“Looking back now, so much of that prolonged diagnosis period makes sense now. It’s wonderful what 10 years of hindsight gives you. I wish I had ‘future me’ to guide me, during what proved to be the most traumatic time in my PD journey...and in my life.”
This figure summarizes the important aspects of delivering a Parkinson’s diagnosis in a way that will ensure compassion and hope are preserved. This figure appeared in our recent 2024 paper.
Delivering the diagnosis:
“I’ve begun to empathize with the messenger. What must it be like to deliver the news and yet be unable to answer the most basic of questions of why, how, when.“
‘Bad news’ has been defined as "situations where there is either a feeling of no hope, a threat to a person's mental or physical well-being, a risk of upsetting an established lifestyle, or where a message is given which conveys to an individual, fewer choices in his or her life."
We can learn from the literature written on cancer and other disease states. This learning can be rich in fields versed in delivering bad news. When bad news is communicated poorly this scenario leads to confusion, long-term distress and resentment. Additionally, when bad news is delivered well, it can actually enhance acceptance, adjustment and understanding.
One model for delivering bad news is the SPIKES framework which includes (i) perception or previous experience with PD (ii) health literacy (iii) cultural background and preferences (iv) ability to access specialized care via a (v) social support network.
The SPIKES framework, though not perfect for all cases of Parkinson’s, can teach us some fundamental principles about how to deliver ‘bad news.’
Delivering the message, which may include bad news, should ideally be administered in a quiet place and one should be sure to allocate adequate time. The delivery can be enhanced when a supportive friend or family member is present. It may help in some cases' to ‘spread out’ the delivery of the news to a second appointment, where a person is asked to bring a ‘loved one,’ to the in-person visit.
Another lesson is that it is important to assess what a person already knows, and to ask a person if it is okay to deliver more information. Allowing a person to dictate the speed and flow of information is important.
Instilling hope and facilitating a person’s ability to express discomfort and fear are critical aspects to the process and should not be minimized.
Following presentation of the information, it is helpful to assess a person with Parkinson’s overall understanding of the situation and of the disease. This can be tricky and hard to gauge. It can be helpful to restate the message at the end of the in-person visit.
A written summary of the points discussed can be extremely valuable. Additionally, being culturally informed and providing support that is mindful of language and that provides resources for the person can be helpful.
Being sensitive to the person’s ethnic background and religious beliefs is critical. Persons with Parkinson’s have not surprisingly reported that they desire information to be presented by someone who is truthful, compassionate and caring. Also, providing follow-up appointments in close proximity is terrific, although may not always be feasible. The availability of a team member for questions and further sign-posting is an essential element to a comprehensive process.
“I walked out of the hospital that day after the initial diagnosis, with nothing other than a prescription in hand. I was left with no information, no referral, no sign posting. Nothing.
I was given no advice on the benefits of exercise or other holistic treatments until many years later”
“Diagnosis is a process, not necessarily a single event or point in time. For one in three diagnoses take over a year. Support services typically start from point of final diagnosis, they should be available from the initial suspected diagnosis”
‘Hope’
This picture by Bloem and colleagues of ‘Hopamine’ is such an important concept to keep in mind when delivering a diagnosis.
Clinicians should keep in mind that ‘hope is a substantiated expectation’ and that ultimately one can influence their own future; hopefully in a positive way.
The concept of delivering hope is that it should be personalized to the person with Parkinson’s and will empower the person to transform into an agent of their own hope. This concept has recently been discussed by Noordegraaf and colleagues. In their paper, a person with a strong patient voice was quoted as “Sooner or later, persons with Parkinson’s disease will need to develop their own personalized hope narratives, with ingredients they can feed themselves on a daily basis. For the beauty of hope is that it simply cannot be delegated. Not without losing its form and strength.”
They quote a person living with ALS “once you put the responsibility of your fate in the hands of an outside force, you are out of the game”.
These authors suggest that employing a multidisciplinary team to assist with education and self-management, the clinician should learn to “sit back and tune in.” Additionally, the use of diaries and wearable sensors to track disease and personalize self-management may be considerations in the modern healthcare setting.
‘Timely’ Diagnosis
There remains no strategy for neuroprotection, disease modification or a cure for Parkinson’s disease, so delivering a diagnosis early versus delivering a ‘timely diagnosis’ has been suggested as an important concept for clinicians to explore.
‘Timely’ recognizes both the potential advantages and the disadvantages of an earlier diagnosis, while concurrently respecting the priorities and wishes of the person with Parkinson’s.
The decision about ‘how much’ or ‘how little’ information to share should always be personalized and should be based on shared decision making. The decision should weigh the person with Parkinson’s overall understanding of their condition, their goals, fears and of course their feelings on potential benefits, as well as possible harms of therapy.
Non-pharmacological approaches such as exercise, represent an important option and with ongoing research about the symptomatic and disease modifying benefits of this therapy, the discussion of exercise can serve as a powerful example of the beneficence of supporting an “early” diagnosis.
This figure shows the importance of a ‘timely diagnosis.’
These authors show the importance of weighing the pro’s and cons of an early diagnosis.
The Role of the Clinician and of the Multidisciplinary Team in Delivering a Diagnosis
The neurologist, psychiatrist, general practitioner as well as the allied health professionals should work together to fulfill complementary roles. The physician or advanced practice provider has the powerful potential to serve as the primary educator and facilitator for the multidisciplinary team. Such a team may include members such as a nurse, psychologist or social worker which early in the diagnosis of Parkinson’s disease can serve as supportive agents.
It should be recognized that there is a reciprocal relationship between the person with Parkinson’s disease and the clinicians as well as the multidisciplinary care team. Well coordinated teams can empower and can ‘redefine a sense of ‘stability.’ Clinicians can directly treat symptoms and can minimize disruptions and distractions for the person with Parkinson’s.
The persons with Parkinson’s disease should be encouraged to become actively engaged and to provide input on what defines stability for them. The team should seek to understand how a person with Parkinson’s defines their concept of ‘self.’
“The multi-disciplinary treatment approach for Parkinson’s disease should ideally be holistic, dynamic, and participatory.”
Utilizing a wellness approach and emphasizing empowerment with the support of an added ‘structure’ and strategy can drive a better outcome. Clinicians should be aware that daily lifestyle choices can drive a person to regain a sense of ‘agency and control.’
Of course, regular and flexible appointments with an expert or a caring clinician would be ideal, however the reality is that these services are not widely available (in most global regions). We must therefore recognize the increased demands on the health care system, the shortage of providers and the limited resources; as the ‘reality of the world we live in.’ We can thus more effectively help folks by providing a Parkinson’s strategy which includes empowerment. We can also teach people to advocate for themselves from diagnosis— and throughout the journey.
“My ‘D-Day’ experience shaped so much of the years that followed. It contributed to my denial, my isolation and left me feeling helpless. It haunts me to this day and i see it echoed amongst the newly diagnosed I meet now. Talk of a ‘honeymoon’ period just left me with a sense that the clock was ticking. A countdown to a fate i couldn’t control. Granted, there is no right way to deliver a Parkinson’s diagnosis...but surely we can do better than this.”
The Bottom Line of Delivering a Parkinson’s Diagnosis
“The delivery of a Parkinson’s disease diagnosis is a pivotal moment in the patient’s journey, and its significance can not be overstated. The manner in which the diagnosis is communicated has far-reaching implications for the physical, emotional and psychological well-being of the patient throughout their Parkinson’s disease trajectory and for their lifetime. As such, it is imperative for healthcare professionals to recognize the importance of their role in delivering a Parkinson’s disease diagnosis. Implementing patient-centered communication strategies such as empathy, active listening and providing clear and complete information can make a profound difference in how the diagnosis is received. As we move forward in our efforts to improve the lives of persons with Parkinson’s disease, let us remember that a new life begins with the diagnosis. By acknowledging the importance of how the diagnosis is delivered, we take a critical step toward fostering hope and improving quality of life for those affected.”
“The time has come for cautious hope instead of conservative paternalism.”
There are many practical tips which can be usefully employed for delivering a diagnosis of Parkinson’s disease. My colleagues and I offer you the list below:
This is a table from our recent publication which offers practical tips for clinicians to improve in ‘diagnosis delivery.’
Finally, we feel that this image is a simple and powerful representation of proactive approaches to living ‘better’ with a Parkinson’s disease diagnosis. We wish you well on your journey, and if your diagnosis delivery got off ‘on the wrong foot,’ we are hoping your road will smooth out soon.
This blog was written by Indu Subramanian, one of the parkinsonsecrets.com co-editors, and a professor at UCLA and the VAMC. She is trained as both a movement disorders neurologist and an integrative medicine specialist.
Jonny Acheson is the parkinsonsecrets.com web-artist, co-editor and he is also a doctor in the UK and a person with Parkinson’s disease.
Michael Okun is a Parkinson’s neurologist at the University of Florida and a co-editor for the parkinsonsecrets.com website.
Selected references:
Waller S, Williams L, Morales-Briceño H, Fung VS. The initial diagnosis and management of Parkinson's disease. Aust J Gen Pract. 2021 Nov;50(11):793-800. doi: 10.31128/AJGP-07-21-6087. PMID: 34713282.
Saint-Hilaire MH, Thomas CA. Delivering a Diagnosis of Parkinson's Disease and Parkinsonism with Wisdom and Sensitivity. Semin Neurol. 2023 Feb;43(1):178-184. doi: 10.1055/s-0043-1763509. Epub 2023 Feb 28. PMID: 36854395.
Subramanian I, Pushparatnam K, McDaniels B, Mathur S, Post B, Schrag A. Delivering the diagnosis of Parkinson's disease- setting the stage with hope and compassion. Parkinsonism Relat Disord. 2024 Jan;118:105926. doi: 10.1016/j.parkreldis.2023.105926. Epub 2023 Dec 21. PMID: 38129230.
Kim S, Cho M, Lee Y. Point-of-Care Platform for Early Diagnosis of Parkinson's Disease. ACS Appl Bio Mater. 2020 Dec 21;3(12):8997-9001. doi: 10.1021/acsabm.0c01242. Epub 2020 Dec 9. PMID: 35019576.
Anestis E, Eccles F, Fletcher I, French M, Simpson J. Giving and receiving a diagnosis of a progressive neurological condition: A scoping review of doctors' and patients' perspectives. Patient Educ Couns. 2020 Sep;103(9):1709-1723. doi: 10.1016/j.pec.2020.03.023. Epub 2020 Apr 2. PMID: 32299642.
Schrag A, Khan K, Hotham S, Merritt R, Rascol O, Graham L. Experience of care for Parkinson's disease in European countries: a survey by the European Parkinson's Disease Association. Eur J Neurol. 2018 Dec;25(12):1410-e120. doi: 10.1111/ene.13738. Epub 2018 Aug 16. PMID: 29939446.
Noordegraaf, M.A., S.W. van den Berg, and B.R. Bloem, Hopamine as Personalized Medicine for Persons with Parkinson's Disease. J Parkinsons Dis, 2023. 13(2): p. 271-277.
Rees, R.N., et al., An early diagnosis is not the same as a timely diagnosis of Parkinson's disease. F1000Res, 2018. 7.
Baile, W.F., et al., SPIKES-A six-step protocol for delivering bad news: application to the patient with cancer. Oncologist, 2000. 5(4): p. 302-11.