How to speak with your doctor (when you have cancer...)
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I gave this presentation at a community symposium for people affected by pancreatic cancer.
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How to speak with your doctor (when you have cancer...)
- 1. How to talk with your doctor Suzana Makowski, MD MMM FACP Associate Director of Palliative Care in the Cancer Center Assistant Professor of Medicine UMass Memorial Medical Center Friday, March 16, 12
- 2. Why talk about this? Helps you get the best care possible: your disease and treatment your wishes and values your hopes and fears your symptoms and side effects what’s most important Friday, March 16, 12
- 3. Things to consider Friday, March 16, 12
- 4. Things to consider How much do you want to know? Friday, March 16, 12
- 5. Things to consider How much do you want to know? Everything? Nothing? Friday, March 16, 12
- 6. Things to consider How much do you want to know? Everything? Nothing? Who else should know? Friday, March 16, 12
- 7. Things to consider How much do you want to know? Everything? Nothing? Who else should know? What should my doctor know about me? Friday, March 16, 12
- 8. Things to consider How much do you want to know? Everything? Nothing? Who else should know? What should my doctor know about me? Consider bringing a notebook/folder, or an organized & trusted friend to record notes & questions Friday, March 16, 12
- 9. Topics Friday, March 16, 12
- 10. Topics Friday, March 16, 12
- 11. Diagnosis and Treatment What do I need to know about my disease? Friday, March 16, 12
- 12. Diagnosis and Treatment What treatment options do I have? Risks and benefits Side effects How should I feel? Friday, March 16, 12
- 13. Diagnosis and Treatment What treatment options do I have? Risks and benefits Side effects How should I feel? Friday, March 16, 12
- 14. Diagnosis and Treatment What other treatment options do II have? What treatment options do have? Risks and benefits Side effects How should I feel? Friday, March 16, 12
- 15. Diagnosis and Treatment What other treatment options do II have? What treatment options do have? Risks and benefits Side effects How should I feel? Friday, March 16, 12
- 16. Diagnosis and Treatment Friday, March 16, 12
- 17. Diagnosis and Treatment How will treatment affect the things that are important to me? Friday, March 16, 12
- 18. Dx/Tx to Sxps Friday, March 16, 12
- 19. Dx/Tx to Sxps Friday, March 16, 12
- 20. Symptoms and side effects Friday, March 16, 12
- 21. Symptoms and side effects Knowing your symptoms and side effects gives doctors clues on how best to care for you. Friday, March 16, 12
- 22. Symptoms and side effects Knowing your symptoms and side effects gives doctors clues on how best to care for you. Untreated symptoms or side effects can drain you physically and emotionally. Friday, March 16, 12
- 23. Symptoms and side effects Knowing your symptoms and side effects gives doctors clues on how best to care for you. Untreated symptoms or side effects can drain you physically and emotionally. The only way we know is if you tell us. Friday, March 16, 12
- 24. Symptoms and side effects “I get so nervous” Friday, March 16, 12
- 25. Symptoms and side effects Friday, March 16, 12
- 26. Symptoms and side effects “I don’t want to be a complainer” Friday, March 16, 12
- 27. Symptoms and side effects Friday, March 16, 12
- 28. Symptoms and side effects “I thought my doctor already knew “ Friday, March 16, 12
- 29. Symptoms and side effects Friday, March 16, 12
- 30. Symptoms and side effects “I can’t afford another medicine” Friday, March 16, 12
- 31. Symptoms and side effects Friday, March 16, 12
- 32. Symptoms and side effects “””I have cancer, I’m supposed to feel this way.” Friday, March 16, 12
- 33. Symptoms and side effects Friday, March 16, 12
- 34. Symptoms and side effects • Tell doctor or your nurse • Write down your symptoms • Bring a friend or family member What kind of symptom? • pain • nausea • breathlessness • anxiety • thinking How bad is it? • mild • moderate • severe Where is it? Timing? • constant • worse in morning/night • intermittent What makes it better? What makes it worse? How does it effect your life, activities? Friday, March 16, 12
- 35. Symptoms and side effects Knowing your symptoms and side effects gives doctors clues on how best to care for you. Untreated symptoms or side effects can drain you physically and emotionally. The only way we know is if you tell us. Friday, March 16, 12
- 36. Topics Friday, March 16, 12
- 37. Topics Friday, March 16, 12
- 38. Friday, March 16, 12
- 39. Prognosis • Talking about prognosis does not change the prognosis • Most doctors wait for patients to ask this question • Helps us plan - even when the prognosis is good Friday, March 16, 12
- 40. End-of-life Where do you want to be? How do you want to be cared for? Who do you want with you? Who can best help advocate for you? Finding hope Friday, March 16, 12
- 41. Elephant to Hope Friday, March 16, 12
- 42. Elephant to Hope Friday, March 16, 12
- 43. Goals of care What’s important to me? What am I fighting for? What are my goals and hopes? Friday, March 16, 12
- 44. Finding hope: good communication means: Partnership: doctor-patient Optimal treatment Personalized care Symptom control Dignity & integrity Friday, March 16, 12
- 45. Thank you Friday, March 16, 12
Notes de l'éditeur
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- Today we will address how to speak with your doctor about:\ndiagnosis & treatment\nSymptoms\nthe elephant in the room\nand finding hope.\n
- Today we will address how to speak with your doctor about:\ndiagnosis & treatment\nSymptoms\nthe elephant in the room\nand finding hope.\n
- Today we will address how to speak with your doctor about:\ndiagnosis & treatment\nSymptoms\nthe elephant in the room\nand finding hope.\n
- How does the stage of the illness effect outcomes and options?\n\n
- What treatment options do I have?\nRisks and benefits\nSide effects\nHow should I feel?\nOther options may include less aggressive options with fewer side effects?\nOn risks and benefits: we talk about how treatments may give patients more time - ask about how much time and at what cost. Some treatments may give 3 more months, and others a few more weeks. Some may cause more hospitalizations - how much is too much? If this has a chance for a cure? What sort of chance - there is a difference between relative and absolute risk - ask about this.\nWhat about alternative therapies?\nWhat about home care?\n
- What treatment options do I have?\nRisks and benefits\nSide effects\nHow should I feel?\nOther options may include less aggressive options with fewer side effects?\nOn risks and benefits: we talk about how treatments may give patients more time - ask about how much time and at what cost. Some treatments may give 3 more months, and others a few more weeks. Some may cause more hospitalizations - how much is too much? If this has a chance for a cure? What sort of chance - there is a difference between relative and absolute risk - ask about this.\nWhat about alternative therapies?\nWhat about home care?\n
- What treatment options do I have?\nRisks and benefits\nSide effects\nHow should I feel?\nOther options may include less aggressive options with fewer side effects?\nOn risks and benefits: we talk about how treatments may give patients more time - ask about how much time and at what cost. Some treatments may give 3 more months, and others a few more weeks. Some may cause more hospitalizations - how much is too much? If this has a chance for a cure? What sort of chance - there is a difference between relative and absolute risk - ask about this.\nWhat about alternative therapies?\nWhat about home care?\n
- What treatment options do I have?\nRisks and benefits\nSide effects\nHow should I feel?\nOther options may include less aggressive options with fewer side effects?\nOn risks and benefits: we talk about how treatments may give patients more time - ask about how much time and at what cost. Some treatments may give 3 more months, and others a few more weeks. Some may cause more hospitalizations - how much is too much? If this has a chance for a cure? What sort of chance - there is a difference between relative and absolute risk - ask about this.\nWhat about alternative therapies?\nWhat about home care?\n
- How will it interfere with work?\nHow about caring for my family?\n
- Today we will address how to speak with your doctor about:\ndiagnosis & treatment\nSymptoms\nthe elephant in the room\nand finding hope.\n
- Doctor’s visits are about exchanging information: symptoms and side effects help us take care of you. \nTests don’t tell us how you feel.\nWe have options to take care of your symptoms: you don’t have to be in pain, have nausea, not sleep, feel anxious or afraid.\n
- Doctor’s visits are about exchanging information: symptoms and side effects help us take care of you. \nTests don’t tell us how you feel.\nWe have options to take care of your symptoms: you don’t have to be in pain, have nausea, not sleep, feel anxious or afraid.\n
- Doctor’s visits are about exchanging information: symptoms and side effects help us take care of you. \nTests don’t tell us how you feel.\nWe have options to take care of your symptoms: you don’t have to be in pain, have nausea, not sleep, feel anxious or afraid.\n
- I get so nervous waiting to hear my test results that my mind goes completely blank.\n
- I’m worried if I ask my doctor about minor things like not being able to sleep, or nausea, it will distract her from treating my cancer. I don’t won’t to sound like a complainer.\n
- He saw my test results, so he knows what I’m feeling. I am sure that if he had something to make me feel better, he would have told me.\n
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- If you feel embarrassed or awkward telling your doctor, tell them that too: “I have this bizarre symptom - I feel silly telling you about it, but...”\n
- Doctor’s visits are about exchanging information: symptoms and side effects help us take care of you. \nTests don’t tell us how you feel.\nWe have options to take care of your symptoms: you don’t have to be in pain, have nausea, not sleep, feel anxious or afraid.\n
- Today we will address how to speak with your doctor about:\ndiagnosis & treatment\nSymptoms\nthe elephant in the room\nand finding hope.\n
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- We are not statistics - and one reason doctors hesitate to give a straight answer is that we are bad at prognosticating. It used to be about all that doctors could offer, but as antibiotics were invented, as therapies for cancer improved, our focus became on therapy rather than on prognosis.\nWe tend to be optimistic. We don’t want to let you down. And sometimes when asked, we balk at the question. But we can give you a general sense, if you want to know.\nWhy would you want to know? Perhaps there is a trip planned - maybe the date should be earlier? Perhaps knowing will change your choice of treatment.\n
- Let your doctor or nurse know about this early on - not at the time of panic or fear. \nThere was a recent study about early palliative care for patients with lung cancer - that they lived better and longer with early support from palliative care while getting treatment. I think these conversations helped secure that place.\nWhen time is getting closer, when disease is progressing - how should your doctor tell you? what do you think you would want? more chemotherapy, to know you are fighting? or more time with family? The earlier your doctor knows your wishes, the better prepared he and your family will be for that time. It will be sad, however far off that time will be, but being prepared will ease the transition if you have planned for it before hand.\nCode status is one example: nobody wants to have chest compressions or to be intubated and nobody wants to die. But when that time comes - \n
- Today we will address how to speak with your doctor about:\ndiagnosis & treatment\nSymptoms\nthe elephant in the room\nand finding hope.\n
- Today we will address how to speak with your doctor about:\ndiagnosis & treatment\nSymptoms\nthe elephant in the room\nand finding hope.\n
- Today we will address how to speak with your doctor about:\ndiagnosis & treatment\nSymptoms\nthe elephant in the room\nand finding hope.\n
- For some people - the fight is the most important: another day, regardless of where and how. Dr. Groopman and Hertzberg wrote a book recently called “Your Medical Mind” - it explains the way different people approach choices in medical care. Some people, they found, are maximalists - wanting the most aggressive, intensive care possible. Others are minimalists - wanting care that will make a difference, but not if it interfers with life and living.\nHigh blood pressure example.\nWhere do you fit? How might you tell your doctor about this?\n
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