Understanding the Unsaid: What Your Healthcare Team May Not Share With You

This article is tailored to the UK’s healthcare context.

If you are being treated for a life-limiting illness or receiving palliative care, you will have been given masses of information to consider and absorb about your health and care. You might miss important details due to the sheer amount of information, or clinicians may inadvertently overlook or forget to share something that is very important to you. On these occasions, it can be difficult to know what to ask, or what information was missed. The saying ‘you don’t know what you don’t know’ couldn’t be more fitting.

Here are some commonly overlooked topics that healthcare teams may not adequately cover. I hope they guide you in asking the right questions and looking for answers.

Getting medical help and advice at home

Serious and life-limiting illnesses are usually diagnosed in a hospital setting by a highly specialized team. They will give you the most important details about the illness, treatment options, and likely or potential outcomes for you (prognosis).

Something that may not be as clear, is information on who will be overseeing your care and treatment when you are at home. Most of the time your General Practitioner (GP) will lead your care, and act as your first port of call if you have any difficulties. They will be informed of your case, have access to your medical notes, your blood test results and other medical test results.

Once you received your diagnosis and are back at home, if they have not reached out, contact your GP and ask for a review, either at the practice or at home. They’ll begin the process of developing a community healthcare plan which could involve social workers, district nurses, occupational therapists, physiotherapists (all of whom the GP can refer to) and home carers if you need them. The community team will provide advice, medication, equipment and referral to other specialists.

If you need medical assistance for day-to-day health issues, contact your GP first. They should know your case pretty well and are best informed to help you. When calling, let the receptionist know that you are a community palliative care patient, and name the Doctor who knows your case best. This will help speed the process of getting a phone review or appointment.

If you need medical help outside of normal working hours, then the NHS 111 service can help. The telephone responder will ask you many questions about your health and may contact your GP or the ambulance service on your behalf. NHS 111 is also useful if you’re ill but don’t feel you require an ambulance.

If you require immediate emergency attention, dial 999 and ask for an ambulance. The NHS ambulance trusts are often overwhelmed and therefore be sure to clearly state the severity of any symptoms and details of your underlying illness.

Medications

You may end up taking many different medications for either treatment or symptom control, and they can be very confusing and overwhelming at first. Remember to keep a record of what medications you’re on and keep the prescriptions for future reference. Here are some things that your healthcare team may skim over but are very important to understand:

1. Effects – what are the medications actually for? If you’re unsure, ask the team or your GP again before you start taking them. Online sources can be misleading, scary and might not take into account the complexity of your condition. The best online resource is the NHS medication portal.
2. Side effects – pharmaceutical companies are legally required to list and warn of ALL of the potential unwanted effects of any particular medication, which can seem intimidating or scary. However, these listings rarely state the likelihood of getting these symptoms (some of which are very rare). If you’re worried, or want more information on the likelihood of the side effects, please ask your healthcare team. If you think you are experiencing side effects get in touch with your GP as soon as possible.
3. Complementary medication – some drugs are routinely prescribed alongside others to reduce side effects (e.g. painkillers are often given with anti-sickness or antacid pills). This is typically not explained well by the medical team, so ask for more details if you need it.
4. Pain control – many painkillers take some time (hours) to take full effect. So if you have continuous (chronic) pain, then it’s really important to take the medication regularly as prescribed to maintain a steady ‘level’ of pain control. Don’t wait until it really hurts before you take it, and try not to skip a dose if you can help it.

Disease progression

Healthcare professionals aim to communicate the severity of your illness in a straightforward and clear manner, but sometimes details may still remain unclear. This is going to be one of the most difficult conversations of your life, but it’s so important to know what’s going to happen in the coming months or years, so you and your family can be prepared. Here are some crucial questions you might want to ask your medical team (please note, not all of these questions will be relevant for your situation and are a guide):

1. Can you tell me when you expect my condition to deteriorate and when should I expect my life to end?
2. How will I physically be affected by the disease? Example questions:
   • Am I going to remain fully mobile and able throughout? If not, when will I get worse? will I end up bed-bound?
   • Is my breathing going to get worse and if so, when? Will I need extra oxygen later on?
   • Is my bowel or bladder function going to be affected? If so, when and in what way? Who can I talk to about this
   • Am I going to have any pain, is it going to get worse with time? What will be done to help with this?
   • Am I going to need physical care from others and need help with moving around, washing, eating, drinking or going to the toilet?
   • Will I need to go into hospital at all, as the disease gets worse?
3. What equipment do I need to be thinking about now, to help me in the future?
   • Do I need to think about movement aids such as sticks, walking frames, hoists or stairlifts?
   • Will I need an adjustable hospital style bed soon, or in the future?
   • Will I be referred to an occupational therapist to help me with all of this?
4. Will my mental abilities decline because of the disease? If so when is this likely to occur? Specifically:
   • Will I have speech problems?
   • Is my conscious level (how awake I am) going to be affected?
   • Am I likely to have memory problems?
   • Will my ability to think clearly be affected?
5. What are the most common symptoms and complications linked to my disease that my family and I should watch out for? And what should we do if we notice any of these symptoms?
6. Are there any new treatments or research I could take part in that might improve my condition? Where can I find out about these?

Have a look at some tips on how to best capture information, and get the answers you might need from your clinical team.

Mental Wellbeing

Hospital doctors who focus on disease progression and treatments, tend to address mental wellbeing last, if at all. This is often left to other professionals in the team such as GPs, nurses and social workers. If you are diagnosed with a life-limiting illness then it is very important that you (and your family) have access to psychological support from the onset. If this hasn’t been offered, or discussed early in your care, then your GP or community nurse can help you access NHS or charitable services.

It’s so important to remember that your care centers around YOU. You have the right to know everything about your disease, your medications, treatments and what the future holds. Having this information will help you and your family prepare, plan and react appropriately and capably throughout your illness. It will help you and your family better advocate for you to secure the best possible care. Your healthcare team will not withhold information from you on purpose, but things can get lost in translation, overlooked, or missed – therefore DO ask questions, and keep asking them until you feel like you’re back in the drivers seat.