Supplemental Questions Guide: Key Questions for Healthcare Providers

This companion guide provides specific, ready-to-use questions for family members to ask healthcare providers during different stages of care. When emotions run high or medical situations become complex, having these questions prepared can help ensure you gather the information needed to make informed decisions. Feel free to adapt these questions to your specific situation or use them as written.

Understanding the Diagnosis & Prognosis

Initial Diagnosis Questions

• "Can you explain in simple terms what this diagnosis means?"

• "How certain are you of this diagnosis? Were other conditions considered?"

• "Is this condition curable, controllable, or progressive?"

• "What is causing these symptoms?"

• "How will this condition likely progress over time?"

• "What is the typical prognosis for someone with this condition and my loved one's specific characteristics (age, overall health, etc.)?"

• "What factors might change this prognosis, either positively or negatively?"

• "What symptoms or changes should we expect to see as the condition progresses?"

• "How will we know if the condition is getting worse?"

• "Are there any specialists we should consult for this specific condition?"

Timeframe and Trajectory Questions

• "What timeline should we be thinking about and planning for?"

• "What are the signposts or stages we might expect going forward?"

• "How quickly do most people with this condition decline?"

• "What factors might speed up or slow down the progression?"

• "How will we know when we're moving to a different stage of the illness?"

• "What symptoms typically appear first? Later?"

• "Are there typical complications we should be prepared for?"

• "What will the final stages of this condition typically look like?"

• "How will we know when the end is approaching?"

• "What can we do now to prepare for future care needs?"

Treatment and Care Options

Treatment Decision Questions

• "What are ALL the treatment options available, including experimental ones?"

• "Which treatment do you recommend and why?"

• "What would you do if this were your family member?"

• "What are the goals of this treatment? (Cure, extend life, reduce symptoms?)"

• "How likely is this treatment to work for someone in my loved one's condition?"

• "What are the specific risks and side effects of each option?"

• "How will each treatment option affect quality of life?"

• "What happens if we choose to forego this treatment?"

• "Is there a less aggressive alternative we should consider?"

• "How will we know if the treatment is working?"

Medication-Specific Questions

• "What is the purpose of each medication being prescribed?"

• "What are the most common side effects? What serious side effects should we watch for?"

• "How will we know if the medication is working correctly?"

• "Are there potential interactions with other medications?"

• "What if my loved one can't swallow pills or keep medication down?"

• "Can any medications be stopped or reduced at this point?"

• "Are there any non-medication alternatives we should consider?"

• "What symptoms should prompt us to call you about this medication?"

• "How will this medication affect alertness, mobility, or other quality-of-life factors?"

• "What's the process if this medication doesn't work as expected?"

Care Setting Questions

• "What level of care does my loved one need at this stage?"

• "Is care at home feasible? What would we need to make that possible?"

• "What are the pros and cons of home care versus hospital/facility care in our situation?"

• "What kind of home modifications or equipment might we need?"

• "What training would family caregivers need?"

• "When should we consider a facility for care?"

• "How do we evaluate different care facilities or services?"

• "What insurance coverage applies to different care settings?"

• "Are there specific programs or services for this condition?"

• "Who coordinates care across different settings or providers?"

Quality of Life Considerations

Comfort and Symptom Management Questions

• "What can be done to manage pain effectively?"

• "How can we address symptoms like nausea, breathlessness, or anxiety?"

• "What non-medication approaches might help with comfort?"

• "How do we balance pain control against alertness?"

• "What position, equipment, or environment changes might increase comfort?"

• "What can we do to improve sleep quality?"

• "How can we manage difficult symptoms like incontinence or confusion with dignity?"

• "What comfort measures are often overlooked that we should consider?"

• "If pain increases, what is our escalation plan?"

• "At what point should we consider palliative care consultation?"

Daily Living Questions

• "What activities can my loved one safely continue to do?"

• "How should we adapt the home environment for safety and comfort?"

• "What dietary considerations are important at this stage?"

• "How can we support mobility as long as possible?"

• "What strategies help maintain independence with personal care?"

• "How can we support cognitive function or manage confusion?"

• "What techniques help with energy conservation?"

• "How can we help maintain social connections and prevent isolation?"

• "What meaningful activities can we adapt to current abilities?"

• "How might sleep patterns change and how should we respond?"

Emotional and Spiritual Support Questions

• "What emotional responses are common with this diagnosis/stage?"

• "What resources exist for psychological support for my loved one?"

• "How can we support our loved one with the emotional aspects of this journey?"

• "What support resources exist for family members?"

• "How can we honor spiritual or religious needs during this time?"

• "Are there chaplains or spiritual care providers we can connect with?"

• "How can we help our loved one find meaning during this difficult time?"

• "How do we talk about death and dying if our loved one wants to discuss it?"

• "What if our loved one doesn't want to discuss death and dying?"

• "How can we create meaningful moments and memories in the time remaining?"

Transitioning to End-of-Life Care

Palliative Care Questions

• "At what point should we consider palliative care?"

• "How is palliative care different from what we're doing now?"

• "Can we continue current treatments while receiving palliative care?"

• "How do we get a referral to palliative care services?"

• "What specific services are included in palliative care?"

• "How does palliative care coordinate with our current medical team?"

• "Does insurance cover palliative care services?"

• "How often would the palliative care team visit?"

• "What symptoms or issues does palliative care specifically address?"

• "How involved will our regular doctor remain if we start palliative care?"

Hospice Care Questions

• "How will we know when it's time to consider hospice care?"

• "What is the difference between palliative care and hospice?"

• "What specific services are included in hospice care?"

• "Can we keep our current doctor when on hospice?"

• "How frequently would hospice staff visit?"

• "What happens if there's a crisis between scheduled visits?"

• "Can we return to curative treatment if we change our minds about hospice?"

• "What support is available for family caregivers through hospice?"

• "How does hospice handle pain management and symptom control?"

• "What happens in the final days and hours with hospice care?"

End-of-Life Planning Questions

• "What physical changes should we expect in the final weeks or days?"

• "How will we know when death is approaching?"

• "What can we do to ensure comfort in the final days?"

• "What symptoms might appear at the end and how are they managed?"

• "How can we prepare ourselves and other family members?"

• "What happens if we need emergency help in the final stages?"

• "Will my loved one be aware of what's happening in the final days/hours?"

• "What options do we have if pain or symptoms become severe?"

• "What should we do when our loved one dies?"

• "What support is available for our family after death occurs?"

Healthcare Team and System Navigation

Care Coordination Questions

• "Who is the main coordinator of my loved one's care?"

• "How do all these specialists communicate with each other?"

• "Who should we contact first with concerns or questions?"

• "How do we reach someone after hours or in an emergency?"

• "How are care decisions documented and shared among the team?"

• "When different providers give conflicting recommendations, how do we proceed?"

• "Can we schedule a team meeting with all involved providers?"

• "How can we access my loved one's complete medical records?"

• "What's the role of each person on the healthcare team?"

• "How can we best partner with the healthcare team?"

Insurance and Financial Questions

• "What parts of this care are covered by insurance?"

• "Are there coverage limits we should be aware of?"

• "What authorization or referrals do we need?"

• "How can we appeal if insurance denies coverage?"

• "Are there financial assistance programs available?"

• "What costs should we anticipate that aren't covered?"

• "How can we get an estimate of out-of-pocket expenses?"

• "Does Medicare/Medicaid cover these services?"

• "Are there benefit programs specific to this condition?"

• "Who can help us navigate the financial aspects of care?"

Decision-Making Questions

Advance Care Planning Questions

• "How can we ensure my loved one's advance directives are followed?"

• "What happens if there's conflict between family members about care decisions?"

• "How do we revisit or revise advance directives if needed?"

• "What decisions might we face that aren't covered in the advance directive?"

• "At what point would my loved one be considered unable to make their own decisions?"

• "How are decisions made if my loved one can't communicate but hasn't completed advance directives?"

• "What legal documents should we have in place?"

• "Who makes decisions about specific aspects of care?"

• "How much leeway do healthcare proxies have in interpreting wishes?"

• "What if we're uncertain about what our loved one would want?"

Weighing Difficult Options Questions

• "What are the trade-offs between extending life and quality of life in this situation?"

• "How do we decide when to stop aggressive treatment?"

• "What factors should we weigh when making this decision?"

• "What are the ethical considerations in this situation?"

• "Can we try a treatment for a limited time to see if it helps?"

• "What would success look like with this approach?"

• "What's the worst-case scenario with this option?"

• "Is this a time-sensitive decision or can we think about it?"

• "What do most families choose in similar situations?"

• "How can we honor our loved one's values when they never explicitly stated their wishes for this situation?"

Questions for Specific Symptoms or Conditions

Pain Management Questions

• "What is causing the pain and can the cause be treated?"

• "What are all our options for pain relief?"

• "How can we assess pain when communication is difficult?"

• "What's the plan if current pain management stops working?"

• "How can we manage breakthrough pain?"

• "What non-medication approaches might help with pain?"

• "How can we balance pain control with alertness?"

• "Are there specialists in pain management we should consult?"

• "What side effects should we watch for with pain medications?"

• "How can we prevent pain rather than just responding to it?"

Breathing Difficulty Questions

• "What's causing the breathing difficulties?"

• "What can we do at home to ease breathing problems?"

• "What position is best for breathing comfort?"

• "What equipment might help with breathing (oxygen, fans, etc.)?"

• "What medications can help with breathlessness?"

• "When should we call for help with breathing problems?"

• "How can we distinguish normal breathing changes from emergencies?"

• "What techniques help manage anxiety during breathing difficulties?"

• "What changes to the environment might help breathing?"

• "At what point should we consider hospitalization for breathing issues?"

Confusion/Cognitive Changes Questions

• "Is this confusion temporary or likely to be permanent?"

• "What's causing these cognitive changes?"

• "Could medications be contributing to confusion?"

• "How should we respond when our loved one is confused?"

• "What are the best ways to communicate when cognition is impaired?"

• "How can we create a safe environment?"

• "When are cognitive changes an emergency requiring immediate attention?"

• "How can we maintain connection when communication becomes difficult?"

• "What strategies help reduce agitation or anxiety with cognitive impairment?"

• "How can we preserve dignity while managing confusion-related behaviors?"

Questions to Ask in Specific Situations

Hospital Admission Questions

• "What is the goal of this hospitalization?"

• "How long do you expect this hospital stay to be?"

• "What criteria need to be met before discharge?"

• "Who is the main doctor responsible for care during this stay?"

• "How will this affect our long-term care plan?"

• "What can we do to prevent complications during the hospital stay?"

• "How can family members best help during hospitalization?"

• "What rehabilitation or recovery is expected after discharge?"

• "What care will be needed after discharge and how do we prepare?"

• "What follow-up appointments will be needed?"

Emergency Room Questions

• "What tests are being done and why?"

• "What are the possible diagnoses being considered?"

• "Is hospitalization necessary or can we manage this at home?"

• "What caused this emergency and how can we prevent it in the future?"

• "How does this emergency affect our overall care plan?"

• "Who will be notified about this emergency (primary doctor, specialists)?"

• "What symptoms indicate we need to return to the emergency room?"

• "What immediate changes should we make to care or medications?"

• "What follow-up is needed after this emergency?"

• "How urgent is this situation - are we making decisions that can't wait?"

Final Days Questions

• "How can we ensure comfort in these final days/hours?"

• "What physical changes should we expect?"

• "How will we know when death is very near?"

• "What medications are essential at this stage?"

• "Should we continue all current medications?"

• "How can we recognize and manage terminal restlessness?"

• "What should we do if breathing patterns change?"

• "Can our loved one still hear us even if unresponsive?"

• "What support is available for our family during this time?"

• "What do we do when our loved one passes away?"

Building Your Own Questions

Use these frameworks to construct your own specific questions:

1. Understanding Treatment Options: "What are the __________ options for __________?" "What are the risks and benefits of __________?" "How will __________ affect quality of life?" "What's the likelihood that __________ will __________?" "What happens if we choose not to __________?"

2. Clarifying Medical Information: "You mentioned __________. Can you explain what that means in everyday terms?" "I've read about __________. Is that relevant to our situation?" "Could you help me understand how __________ relates to __________?" "What's the difference between __________ and __________?" "Could you draw/show me what you mean by __________?"

3. Planning and Preparation: "What should we prepare for in the next __________?" "How will we know when it's time to __________?" "What can we do now to prevent __________?" "What's our plan if __________ happens?" "Who should we contact when __________?"

Remember: There are no "stupid" questions when it comes to your loved one's care. Healthcare providers are accustomed to explaining complex information, and most appreciate family members who are engaged and seeking to understand. If you don't understand something, ask again or request that it be explained differently.