Talking with your doctors about palliative care Dr. Mary Anne Huggins and Barbara Pidcock

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1 Talking with your doctors about palliative care Dr. Mary Anne Huggins and Barbara Pidcock You will have appointments with your family doctor, and with specialists. It will help you if you write your brief list of questions before your appointment, so you remember what to ask. The following information may also help you get ready for your appointments. Family doctors have training and experience in family or general medicine, while specialists have training and experience in other areas, such as cardiology (heart problems) or oncology (cancer). Normally, you are referred to a specialist by your family doctor or by another specialist. Your family doctor can help you understand what your specialist has told you about your illness and prognosis, the meaning of palliative care, and what steps you can take next. Ask your: Specialist page 2 Family doctor page 2 Both your specialist and your family doctor page 2 Pharmacist page 3 Summary Chart page 4 You may decide that you don t want to hear information about your future. In this case, it would be a good idea to ask someone to go with you to talk to your doctor. Let both your specialist and family doctor know that this person will help make decisions with you, even though you are competent. You should also appoint this person (or persons) to be your Power of Attorney for Personal Care. Give your doctor a copy of the Power of Attorney for Personal Care. For a comprehensive guide that provides you information on how to appoint a Power of Attorney for Personal Care, and other useful information: Although your specialist and your family doctor communicate with each other (they send each other reports and letters) you and your family can make sure that various doctors have all the information they need about your health. Take charge and help make sure that your physicians are up-to-date and informed! Pg 1

2 The following points may help to guide you in discussions with your doctors. Ask your specialist: Ask about the plan of care or the goals of care and the purpose of treatments for instance, will treatment prolong your life, and for how long? Ask if these treatments will have side effects so you can talk to the specialist about whether they are going to affect your quality of life. Describe your pain and other symptoms. At every appointment show your specialist the current medications you are taking show your doctor the medication bottles or the medication record from your pharmacist. Are there life style changes you can make that might relieve your symptoms, or allow you to reduce some medications? Ask your family doctor: Describe your pain and other symptoms. Ask your family doctor what will happen if you become too sick to visit the doctor s office how will he/she continue to provide your care? Can he/she help you understand more about your illness and what care may be needed in the future? At every appointment show your doctor the current medications you are taking show your doctor the medication bottles or the medication record from your pharmacist. Ask your doctor to explain what medication you are taking, and understand what the medication is for. It is a good idea to follow-up with your pharmacist who can explain your medication further. (See Talk to your pharmacist below). Discuss with both your specialist and your family doctor: What quality of life means to you. This may include spending time with loved ones, having pain and other distressing symptoms treated quickly and completely, the ability to make your own decisions for care and your preferred location of treatments (at home, hospice or the hospital). If you have any personal, religious, or cultural beliefs, values, or practices that are important to consider in your care and treatment. If you are not already receiving services at home from the Community Care Access Centre, ask for a referral. Pg 2

3 What treatments you may or may not want if they became necessary to prolong your life, such as the following: resuscitation if your heart were to stop have a mechanical ventilator breathe for you if your lungs were to fail have your blood filtered on a dialysis machine if your kidneys were to fail artificial nutrition by a feeding tube if you were unable to eat intensive care in a hospital intensive care unit. If you wish, your doctor can help you fill out a Do Not Resuscitate Confirmation Form, which will make sure your wishes are honoured if you need to use an ambulance or paramedic service. If you have completed a written advance directive, or named a substitute decision maker, or filled out power of attorney forms, inform your doctor and provide him or her with a copy. Pg 3

4 Talk with your pharmacist: If at all possible, try to stay with one pharmacy. Your prescription records and history are kept in the pharmacy where you fill the prescription, and cannot be sent to other pharmacies. If you have one pharmacist they can identify possible drug interactions or allergies with any new prescriptions, medicines or herbal products that you purchase at that pharmacy. Review with your pharmacist: Review the medications prescribed by your doctor, and review how to take them. Ask when and how often you should take the medicine, and how many days should you take your medicine for? They can help by demonstrating (for example how to take a puffer). What you should do if you forget to take the medicine? Are there special instructions for taking the medicine (such as food, drink or storage instructions)? What side effects can occur in taking the medicine and how you can recognize signs of adverse symptoms or dangerous side effects? What to do if you experience any problems in taking the medicine? How to store the medicine. Ask for a list of all your prescribed drugs and dosages to take away with you. Tell your pharmacist: If you are taking non-prescription and herbal products. Interactions are not restricted to mixing prescription medicines. If you have difficulty in taking your medications (such as you can t remember when to take it, or you have difficulty swallowing) and ask for recommendations. If you have side effects or unusual symptoms after taking medications. The pharmacist can offer advice to alleviate the symptoms (such as taking the medication with food) or call your doctor and discuss alternatives. Be sure to check your medication before you leave the pharmacy is it the correct prescription that your doctor prescribed? Pg 4

5 Have you talked to your doctors about: At Every Appointment have you: Yes/No Shown your current medication bottles or the medication record from your pharmacist. Described pain and other symptoms. At least ONE appointment has dealt with these issues: Do you know what the plan will be if you are unable to visit your family doctor s office? Have you discussed what quality of life means to you? Have your described any personal, religious, or cultural beliefs, values, or practices? Have you discussed what treatments you may or may not want if they became necessary to prolong your life? If you wanted one, do you have a Do Not Resuscitate Confirmation Form? Have you been referred to home care services (through the Community Care Access Centre)? Do you understand the plan of care, the goals of care, and the purpose of treatments? Do you understand the side effects of treatments? If you have completed a written advance directive, or named a substitute decision maker, or filled out power of attorney forms, have you provided your doctors with copies? Pg 5