Friday morning, Bill* awoke after a bad night. He had awoken many times because of his tremors, caused by Parkinson’s disease. His collar bones were sore this morning because his arms had been shaking so badly! He knew he was stuck in a tremor episode, and he had no idea when the vigorous shaking would stop, when the relief would come. He needed help to see if there was anything to calm the shaking.
Bill’s wife, June*, called the clinic to speak to the nurse who works with the neurologist. No answer. June had to leave a message, hoping desperately that the nurse would call back soon. They didn’t know what they could do to give Bill peace.
By evening, the nurse had not called. The tremors continued, and the ache was getting worse. Neither Bill nor June knew what they were going to do, how they were going to manage the weekend. They knew now that they were going to be waiting until at least Tuesday to hear from the nurse – it was a long-weekend coming up, and the clinic would be closed for the next three days. That would make it at least five days from the start of the episode to finally talking to someone who might be able to help. Bill felt angry, helpless, and anxious. When would he get help? June felt anxious and helpless, too. How was she going to care for Bill this weekend when she didn’t have the resources to deal with this situation?
This is just one story I have heard where a patient or caregiver has called to get answers about symptoms that worry them, and they wait for days to get an answer. In the meantime, they feel powerless and anxious, since they don’t know what to do to improve the situation. It’s frustrating that the system that is supposed to be supporting them isn’t meeting patient concerns.
In our conversation, Bill told me he understands that the doctor and the nurse can’t attend the phone all the time – they have other responsibilities. And he acknowledged that the doctor and the nurse need time off, too. But, surely, there has to be a way to make sure that patients get help when they need it, rather than when it fits the medical experts’ schedules. Bill’s disease does not respect the difference between work day versus night time, weekdays versus weekends; Bill does not get a choice to suffer from tremors only when it would be convenient to connect with his health providers. When he needed help, why wasn’t help available? How is it okay to allow patients to suffer for days?
One thing that patients can do to make sure they get timely answers to questions between appointments is to ask their doctor who they can contact, how to contact them, when to expect a response, and what they can do when they need help quickly. This is important for patients dealing with ongoing treatment and/or chronic disease, because there is no doubt they will have questions that urgently need answers. Bill and June knew where to expect help: they knew that the specialist had a designated nurse who managed patient questions between medical appointments. Where Bill and June were powerless was in not knowing how long they would have to wait for answers – when this is unknown, there’s no way to manage expectations and use strategies to manage anxiety – or how they could get help in urgent cases – when this is unknown, it puts the patient’s life and wellbeing at risk.
When Bill and June talked to the neurologist about this incident, they were frustrated that their pleas for help were met with reasons, instead of possible solutions. Even if there were no immediate solutions to the problem, it would have been meaningful to know that the doctor heard their experience and took it to heart; that they would sit with the question of what could be done to improve patient care and support; that they acknowledged that the patient experience is more than just symptoms and symptom management, that patient feelings and thoughts are real, too, and are impacted by quality of care.
If you are looking to improve communication with your doctor, I offer to attend an appointment with you, to advocate for you, to make your needs clear, and to open-up conversations that explore possible solutions. If you would love some support to experience a new kind of conversation with your doctor, please call. It would be a privilege to hear your story, and an honour to give your truth a voice.
You Don’t Have to Journey Alone!
Kirstin Veugelers, PhD Personal Patient Navigator
Navigate Your Health
*names are changed for privacy
They had to leave a message, hoping desperately that the nurse would call back soon. When would they get help?
Even if there were no immediate solutions to the problem, it would have been meaningful to know that the doctor heard their experience and took it to heart.