Receiving a terminal diagnosis can be overwhelming, leaving you feeling lost and uncertain about the future. This guide is designed to empower you with the knowledge and questions you need to navigate this challenging time. It will help you understand your illness, explore your treatment options, and make informed decisions about your care, ensuring your wishes are respected and your quality of life is prioritized.
This guide is for anyone facing a terminal illness, or a serious condition that significantly alters their life. Whether you are dealing with cancer, dementia, motor neurone disease, or advanced organ failure, understanding the right Diagnosis Questions to ask is the first step towards taking control of your journey.
Drawing on the experiences of over 600 individuals living with terminal illnesses and their caregivers, this resource provides insights and advice to guide you. Their diverse perspectives highlight that each person’s experience is unique, and the questions that matter most will vary. This guide aims to equip you with a starting point, encouraging you to delve deeper and seek the specific information that resonates with your personal needs and values.
The Power of Asking Diagnosis Questions
Why is it so important to ask questions following a terminal diagnosis? The individuals we spoke with emphasized that asking the right questions was instrumental in making informed decisions. This, in turn, led to receiving care and treatment aligned with their preferences, enabling them to live as well as possible with the time they had left.
Understanding the trajectory of your illness allows for proactive planning. It provides a sense of control amidst uncertainty by painting a clearer picture of what to expect. Remember, your journey is personal, and your choices should reflect your individual values and priorities.
“We were not prepared for the exhaustion terminal illness brings. Put energy into making decisions, and arranging your care as early into the process as possible because further down the line you may not be able to.”
“Our choices were supported and we were prepared to make the necessary decisions, but that was because we had thought and talked about it. We knew the questions to ask and that’s important. Many on our medical team would not offer the information we needed unless we asked for it.”
“You might need to push for what you want to happen. You don’t have to accept what your medical team think is best for you.”
Understanding the Emotional Landscape of a Terminal Diagnosis
It’s natural to experience a wide spectrum of emotions upon receiving a terminal diagnosis. Anger, denial, sadness, shock, and worry are all common reactions. You might feel frustrated, questioning if more could have been done, or grappling with the perceived unfairness of the situation.
“I was relieved to finally know my diagnosis after almost two years of rapid physical deterioration and difficulties in finding what was wrong.”
“It was initially a shock. I didn’t take the news well and became very angry. Now I live with it, I just take every day as it comes.”
“The news was devastating, to be told you have a progressively debilitating incurable disease, at the time it felt truly hopeless, I thought I would lose my identity. But now I find it worse for my loved ones than me. I am very positive in my outlook.”
Living with a terminal illness involves adapting to ongoing changes in your physical and emotional well-being. Daily routines may need adjustments, and emotional states can fluctuate.
“I feel as if I’m carrying a rucksack I can’t put down and is always there.”
“My emotional state changes, one day I’m positive, the next I feel downright angry.”
“It’s hard not to feel resentful of the ‘well’, although I know there are many far worse off than me.”
“For me it is both frightening and rewarding. It can be hard. Sometimes it feels like nobody else could possibly understand my day-to-day life.”
“You think you are in control but then lose it over the most trivial thing, and only then realise how stressed you are.”
The Impact on Relationships with Family and Friends
Terminal illness can profoundly impact relationships with loved ones. While it can present challenges, it can also foster deeper connections and open communication.
“Having a terminal illness, oddly, has brought us closer as a family. We talk much more openly and I feel more able to talk about how I feel. Maybe it’s because if I don’t do it now I know I won’t be able to later. In a way it’s a gift.”
“I’m upset by the blasé attitude of some of my family. It’s like they don’t understand what’s happening, or don’t want to, but I want to talk about it and make plans for what time I have left.”
“I wasn’t prepared for people’s reactions. I have had time to get used to the idea as it’s been a long time coming. But the sorrow I see when people look at me and then cry makes it really hard.”
“I hate it when people say “You look so well!” I don’t feel it.”
“It’s hard with my disease (MS), because there is nothing to ‘see’ people don’t understand how crippling it is.”
“My daughter’s reaction was hard – she wants me to live forever but that’s not possible for me.”
Practical Advice from Others Who Have Navigated Terminal Illness
Those who have walked this path before offer invaluable advice:
Seek Support
“Find out what local services and support are available, such as GP home visits, specialist nurses, home care, and support with shopping.”
“Don’t be afraid to ask for help. I always call on my siblings to help make any decisions. No way could I handle some of the choices on my own.”
Communicate Openly
“Talk about how you feel and what you want. If there are support groups in your area, try them out. I found it really helpful to talk to others.”
“Ask for a counsellor if you need one. Talking things through does help.”
“Take the care offered. There will come a time when you can’t do some things so you’ll be glad for the support.”
Financial and Benefit Considerations
“Find out what financial support you are due, like attendance allowance. You may have extra expenses you don’t foresee like bedding, nightwear, and incontinence pads.”
Maintaining Independence
“Ask to speak to an occupational therapist who can advise about lifts, bathing aids, toilet adaptations, and alterations to clothing to make it easier to take them on and off.”
“Ask your occupational therapist for information about how to use a bottle bedpan or commode independently, so you have some dignity in that area if you need it.”
“You may be entitled to financial help for equipment like a raiser bed (very helpful), stair lift, shower seat, and lightweight plastic drawers on wheels for medical needs.”
Other Practical Tips
“There are lots of little things that are worth asking about, that you might not consider. For example if you are self-administering injections, where to get the sharps bin collected?”
“We found you can buy lemon and glycerine mouth swabs to use when the dying person can no longer swallow. The care agency also told me we could use plain swab sticks dipped in pineapple juice.”
“If you live on your own you might need a ‘pendant alarm’, so you can alert social services if you are in trouble.”
“Think about if you are restricted to bed or home, what would you need to make life comfortable?”
“Make sure there is enough medication especially at weekends and bank holidays, and ensure your healthcare team have considered anticipatory drugs to control any symptoms.”
Gaining Clarity: Asking the Right Diagnosis Questions to Your Healthcare Team
Accessing comprehensive information about your illness is paramount. Your healthcare team is responsible for providing sensitive and honest answers to your diagnosis questions.
“The hospital staff were wonderful. The doctors and nurses shared information, and explained all aspects of my disease, treatment, and prognosis. They showed me what warning signs to look out for and what to do when something unexpected happened.”
“The medical professionals have been great in terms of information on current treatments but not much use for information on emotional support or lifestyle.”
“I wasn’t prepared for health professionals not giving you the information you need or not answering your questions at all.”
“The information shared between the NHS and the care home was poor. One major thing we’ve learned is that you should never assume that information is shared between professionals.”
Essential Information to Obtain About Your Illness
Your doctor should clearly explain your diagnosis, using understandable language, and detail your treatment options. This includes explaining any medical terminology, as well as the benefits and drawbacks of each treatment, including potential risks and side effects. While your doctor can recommend a course of treatment, they should not pressure you to accept it.
Remember, you can control the pace of information delivery. Let your doctor know how much information you want at each appointment and don’t hesitate to ask for clarification or repetition.
What to Do When You Don’t Understand
It is perfectly acceptable to admit when you don’t understand something your doctor has explained. They should be prepared to rephrase or elaborate in a different way until you grasp the information.
Understanding Statistical Information
Doctors sometimes use statistics to explain diagnoses or treatment outcomes. For example, they might say, “80% of patients respond well to this medication,” or “Individuals with this condition typically live for X years.” These statistics can provide context and aid in understanding your situation and potential outcomes.
If You Prefer Not to Know Everything
Some individuals prefer to process information gradually or avoid certain details altogether. It is your right to communicate your preferences to your doctor regarding the level of detail you wish to receive about your illness.
While many patients report positive communication experiences with their doctors, others find it challenging. A doctor explained that sometimes healthcare professionals might be hesitant to share the full extent of the prognosis to avoid causing undue distress. However, it’s crucial to advocate for your need for information while being mindful of the doctor’s perspective.
Doctors may not always have definitive answers, and responses like “it depends” might indicate uncertainty. Don’t hesitate to ask for clarification if you sense ambiguity by asking directly, “Is there no definite answer?”
Communication styles vary among doctors, and even skilled communicators can be rushed or stressed. Preparing a list of diagnosis questions beforehand ensures you cover all your concerns.
Formulating Your Diagnosis Questions
Asking diagnosis questions is not about challenging your medical team, but about fostering a collaborative partnership in your care. It’s about ensuring your voice is heard and your needs are met.
“I did not feel well informed on the last day of my mum’s life. She was unconscious, but I did not realise she was so close to death. Although the live-in carer was aware of this, and the surgery nurse came to the house to give her an injection to ease her breathing, they spoke to my father and myself in euphemisms rather than clearly explaining what was happening and how little time she had left. I wish I had known the right questions to ask.”
“Get all the information you can about your diagnosis, possible treatments and prognosis. Be strong – you may have to push for this. Ask about side-effects and think carefully about whether you want to undertake particular treatments or not. Your quality of life is important.”
Starting Point for Formulating Diagnosis Questions
Remember, you are not expected to be a medical expert or generate treatment options yourself – that’s your doctor’s role. Your primary role is to communicate what matters most to you. By understanding your priorities, your doctor can tailor treatment discussions to your specific situation and wishes, enabling you to make the most appropriate decisions for yourself.
A comprehensive list of diagnosis questions is provided at the end of this guide to help you consider what you want to know and how to articulate your queries effectively.
Who to Direct Your Diagnosis Questions To
You might be unsure about who is best suited to answer your diagnosis questions. Your care will likely be managed by a multidisciplinary team, comprising various healthcare professionals working together. This team might include:
- Specialist in your condition: (e.g., oncologist, neurologist)
- Clinical Nurse Specialist: (expert in a specific area like palliative care or pain management)
- Macmillan or Chemotherapy Nurse
- Marie Curie Nurse
- Surgeon
- Radiologist: (specialist in scans and imaging)
- Palliative Care Professionals: (specializing in comfort and end-of-life care)
- General Practitioner (GP)
- Psychologist or Counselor
- Social Worker
- Nutritionist or Dietitian
- Occupational Therapist or Physiotherapist
You can direct your diagnosis questions to any member of this team.
When to Ask Your Diagnosis Questions
You can ask diagnosis questions at any point in your journey. Some prefer to receive information gradually, while others want all available details upfront. Communicate your preferred approach to your healthcare team.
Alternative Information Sources
If you are hesitant to ask your healthcare team directly, or wish to supplement the information provided, the internet can be a valuable resource. However, it’s crucial to rely on trusted sources.
“The growth in support on the internet has been a total game-changer and I wish it had been available when we needed it. It was still in its infancy when we were looking for information.”
Tips for Effective Communication with Your Healthcare Team
“When you are first diagnosed you might go into shock and therefore might not know the questions you want to ask until your head clears. So ask for a follow-up appointment.”
“Write it down! Make a list of your questions beforehand and also take notes when you’re there (or get the person with you to take notes).”
“You don’t have to ask all your questions in one go. You might feel tired or that you’ve heard enough for one day.”
“It’s ok to say you don’t understand and ask them to explain in a different way.”
“If you feel the conversation is going too fast you should say so.”
“If you feel like you aren’t getting the information you want don’t give up! Sometimes you might have to persevere but you have a right to know what you want to know.”
“It can help to have somebody you trust alongside you because you might not always feel well enough to speak up for yourself or remember what is said.”
Making Informed Decisions About Your Care
Ultimately, navigating a terminal diagnosis involves making choices that align with your values and preferences.
“When the first radiotherapy and chemotherapy combination failed, we had to decide whether or not to accept the option of a second different chemotherapy treatment, with limited chance of success and the potential to shorten my wife’s life.
Deciding whether to take it or not was difficult. We decided not to take the offer and prioritise her quality of life.”
“I was asked if I would want to be resuscitated if my heart stopped. This was tough as it felt out of the blue, but I’m glad they asked.”
Types of Decisions You Might Face
Consider these examples of decisions you might encounter:
- Pain Management vs. Alertness: “Would you prefer medication that effectively relieves pain but causes drowsiness and limits interaction, or less potent pain relief that allows you to remain alert?”
- Life Extension vs. Quality of Life: “Would you opt for surgery that might extend your life by a couple of years but result in impaired mobility or discomfort, or choose not to have surgery and live for a shorter time with better quality of life?”
- Hospice vs. Home Care: “Would you prefer to spend your final weeks in a hospice with 24-hour nursing care in an unfamiliar setting, or remain at home in familiar surroundings with potentially different levels of care?”
Documenting Your Wishes: Advance Care Planning
Documenting your wishes is crucial to ensure they are known and respected. Written documentation carries legal weight and reduces the need to repeatedly explain your preferences to different healthcare professionals.
“Making a living will (advance decision) helped to start a conversation with my family and doctor. It gave me peace of mind – my family now know exactly what I want and won’t have to make difficult decisions on my behalf.”
“Be clear about what you do or don’t want. It is hard for health professionals to make decisions for you so it is better for everyone if it is written down.”
It’s important to understand that family members do not automatically have the authority to make health decisions on your behalf. While healthcare providers will consult with loved ones, your documented wishes hold significant weight.
Ways to Record Your Wishes
- Advance Decision to Refuse Treatment (Living Will): This legally binding document allows you to refuse specific medical treatments in the future if you lose capacity to make decisions.
- Lasting Power of Attorney for Health and Welfare: Appoint someone you trust to make health and care decisions on your behalf if you are unable to do so.
- Advance Care Plan: A broader document outlining your wishes, values, and preferences for your future care, including but not limited to medical treatment.
`Alt text: Healthcare professionals discussing diagnosis questions with a patient, emphasizing open communication and patient-centered care.`
Questions to Ask Your Healthcare Team: A Starting Point
The following diagnosis questions are designed to facilitate productive conversations with your healthcare team. They are based on feedback from individuals living with terminal illnesses and healthcare professionals, covering key areas of concern and information needs.
Remember, you don’t have to ask all of these questions. Select those that are most relevant to your situation and add your own. Bring this list with you to your appointments to ensure you don’t forget anything important.
Understanding My Diagnosis
- What is my exact diagnosis, and what does it mean in clear, non-medical terms?
- Can you explain the stage or progression of my illness?
- What is the typical prognosis for my condition?
- Are there any factors specific to my case that might influence my prognosis?
- What are the potential symptoms I might experience as my illness progresses?
- How will my illness affect my daily life, activities, and independence?
Treatment Options and Goals
- What are the available treatment options for my condition?
- What are the goals of each treatment option (e.g., cure, remission, symptom management, palliative care)?
- Can you explain the potential benefits and risks of each treatment option?
- What are the possible side effects of each treatment, and how can they be managed?
- How will treatment affect my quality of life?
- Is there a recommended treatment plan for me, and why?
- What happens if I choose not to pursue treatment or certain treatments?
- Are there any clinical trials or research studies relevant to my condition?
Palliative and Supportive Care
- What palliative care services are available to me, and when should I consider them?
- How can palliative care help manage my symptoms and improve my comfort?
- What support services are available for emotional, psychological, and spiritual well-being?
- Are there support groups or counseling services for patients and families dealing with terminal illness?
- How can you help me manage pain and other distressing symptoms?
- What resources are available for home care and support?
- Can you refer me to an occupational therapist or physiotherapist to help with daily living?
Practical and Logistical Considerations
- Who will be my main point of contact within the healthcare team?
- How can I reach you or other members of the team if I have questions or concerns?
- What should I do in case of an emergency or unexpected symptoms?
- How often will I need appointments, and what is the typical format of these appointments?
- Are there any financial assistance programs or benefits I may be eligible for?
- Can you connect me with a social worker to discuss practical and financial support?
- What equipment or adaptations might I need at home as my illness progresses?
End-of-Life Care Planning
- What are my options for end-of-life care (e.g., hospice, home care, hospital)?
- When is the right time to start discussing end-of-life care in more detail?
- How can I document my wishes for end-of-life care, such as advance directives or living wills?
- What support is available for my family and loved ones, both during and after my illness?
- What resources are available for bereavement support?
Personal Questions and Concerns
- What can I do to maintain my quality of life and independence for as long as possible?
- How can I best communicate my needs and wishes to my family and healthcare team?
- What are the most important things I should be focusing on right now?
- Are there any lifestyle adjustments or self-care practices that might be beneficial?
- What are the things that are most important for me to consider as I face this journey?
- What are the common misconceptions about my illness that I should be aware of?
`Alt text: Empathetic nurse providing comfort and support to a patient, highlighting the importance of compassionate care in diagnosis discussions.`
This list is a starting point. Prioritize the diagnosis questions that are most important to you and don’t hesitate to ask for clarification and further information. Empowering yourself with knowledge is a vital step in navigating your diagnosis journey with confidence and control.
Related Resources
- Starting the Conversation: Our helpful guide to get you confident talking about your wishes for end-of-life care with loved ones, doctors and nurses.
- Planning Ahead: Not sure where to start? Try our simple guide to planning ahead to help you choose what’s right for you.
- Contact Us: Our nurse-led information line is free of cost and free of judgement. We’re here for you, whether you’re preparing for the years ahead or need us right now.
