I recently had a conversation with an elderly woman who wanted to share her discomfort with me. She wanted someone to know how difficult her life had become. In listening to her tale of woe, I was reminded once again that caregivers are often critical in making patients' lives better. Here's why. Her physician put her on a very powerful medication, one that my mother refused to take, and this elderly woman wanted someone to know that she hated it. I let her talk because she needed to "get it out of her system". She was clearly frustrated with her medical situation, but it was more than that. She felt had nowhere to turn for answers or options. When she told me that the doctors never listen to her, I cringed. The truth is that doctor-patient communication is absolutely critical in pain management. Without effective and honest conversation, there's no way a doctor is going to be able to solve a solvable problem. Doctors aren't mind readers.
Neuropathy was one of the most frustrating side effects of chemotherapy for my mother. But the pain medication she was prescribed for this condition turned out to be more debilitating than the "pins and needles". She felt like she was separated from her body and it "creeped her out". When a patient reports feeling that abnormal because of a drug, sometimes it's a drug interaction or reaction. The patient might need a lower dose or even a change. But if a patient doesn't report this to the prescriber, how will the situation get better?
As a cancer caregiver, it was my job to understand how well my mother was tolerating the treatments she was receiving and to figure out ways of helping her meet her needs better. Sometimes that meant making sure that the medical treatment team had the important information they needed to make the best decisions. But for many cancer patients, it's not always easy to share what's really going on. Doctors often are busy, with back-to-back appointments. Cancer patients with fatigue are already dragging their feet as they go through the day. A high-energy doctor and a low-energy patient aren't always a good combination. That's why a wise cancer caregiver may sometimes need to step in and prompt a patient to share what's really going on.
When you only have so much energy to get you through your day, when your thoughts are muddled by drugs, treatments, or even just the stress of having cancer, the path of least resistance can seem attractive. That means raising the white flag in defeat. Too many cancer patients turn away from the fight to get problems fixed.
This is why many cancer patients benefit from having cancer caregivers. We serve as support teams for our loved ones. We also serve as advocates. By accurately observing the symptoms our loved ones experience, and by putting these into logical context, we can often intercede to get the right help for our loved ones. We are sometimes the bridge between doctor and patient, and the better we can understand our loved ones' experiences, the more likely we are to help them get what they need.
Is it because our loved ones feel like the walking wounded? Is it because they fear that the discomfort they experience is symptomatic of new issues? Or is it just that they don't think there is any way to make a bad situation better? Sometimes cancer patients, especially those who have been in treatment for a long, long time, just kind of shrug off new problems with resignation. That's why cancer caregivers have to pay attention and guide their loved ones to effectively communicate with the medical team.
In my mother's case, the medication was just too strong for the amount of physical pain she had, and that meant that the medication, rather than relieving the symptoms, only made her feel "loopy" and not at all like herself. The solution was simple enough. She stopped that medication and went to something milder.
This wasn't the only time that my mother was prescribed a pain medication during cancer treatment that made her miserable. She once was given a pain patch that drove her bananas. Some patients really don't tolerate pain medications very well, and for them, the standard course isn't always the right course. A good palliative care specialist always takes that into consideration when making adjustments. That's the goal of pain management; to find the right balance between taking enough of the pain away to enable the patient to function at the highest level and making sure that the patient isn't overmedicated. But, as always, the level of medication can be adjusted only when the patient and caregiver are able to effectively share the information with the medical team.
The loss of hope can have a profound effect on doctor-patient communications, especially when your loved one assumes there are no more options. A wise cancer caregiver understands that it's not a matter of taking over and reporting to the physician on a patient's situation. But it's your duty to get real answers for real issues.
My mother was delighted to learn that things could indeed get better. Once she had the chance to see that the physician really did want to help her, she admitted she was having difficulty with medications. Mind you, there may be times when there aren't a lot of alternatives. And sometimes where your loved one is with the cancer can effect the medication. But you should always encourage the dialogue. because sometimes the "not knowing" is worse than the truth.
My philosophy of listening and guiding paid off for the elderly woman. She called me a few days later, wanting to ask me some more questions about my mother's experience with the drug she was taking. As she spoke, she acknowledged that her physician had previously prescribed a lower dose of the drug and she had felt much, much better. She couldn't remember why he had recently increased the dosage, but he had. And the more she thought about it, the more she wished she could go back to the way she felt when the dosage was lower.
But she had already ruled out talking to the doctor, to the physician assistant, and to the nurse practitioner (right there you know there's a significant communications breakdown.) What was left? The local pharmacist. Believe or not, sometimes the pharmacist who dispenses the medications can be a significant resource for caregivers and patients. Once I established the fact that she not only knew him and liked him, we discussed how approachable and personable he was. Could she feel comfortable asking him about the medication? Could she trust him to be straight with her on options?
The local pharmacist is often someone who can play a positive role in pain management, if for no other reason than he or she can be a fountain of information on side effects and ways to effectively manage these. Pharmacists can help patients and their caregivers navigate the issues without interfering in the patient-doctor relationship. If anything, a pharmacist can often help a patient understand better ways of communicating the real problems to the medical team. Is it because pharmacists aren't usually perceived as intimidating, short on time, or uninterested, or is it because they understand drugs and drug interactions? Who knows. What's important is that patients get what they need, and wise cancer caregivers know that any way you can make that happen, it's a positive step in the right direction.
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