Patient tips to help doctors to talk about death and dying. Try asking, "Can we talk about palliative care please - in case the treatment doesn't work" - and don't be fobbed off by attempts at reassurance or "we'll cross that bridge when we come to it". Start the conversation!
Another patient tip to help doctors talk about death: Try “I’m feeling that the benefits of continuing treatment are outweighed by the disadvantages. Can we talk about how I’d be cared for if I stopped dialysis?”
Patient tip: Doctors can be anxious about the D word. Instead of "I'm ready to die" or "I'd rather be dead", try: "Can you help me maximise my QUALITY (rather than quantity) of life. I'd like to enjoy the time I have left other than trying to extend my life as long as possible."
Patient tip: You have a right to refuse treatment - but if you decide you don't want the medications you've been prescribed, it's best not to just stop. Tell your Dr why you don't want to take them. Dr can't make you - and may be able to offer care that's better for you instead.
Patient tip: If you refuse life-prolonging treatment & are referred for a capacity assessment, be prepared to show that you understand relevant info & have weighed pros & cons of yr Decision. Try saying: “My dr thinks my decision is unwise but it’s right for me because....”.
Patient tip: Advice about end-of-life conversations focuses on your OWN death. But you may be involved in decisions when a friend/relative is dying. You'll be consulted about what the person wld have wanted for themselves, their values, feelings, wishes + beliefs. @RCPLondon
Patient tip: if a doctor asks you what someone who can't decide for themselves might want, avoid saying "he'd rather be dead" (even if it's true) because that can make doctors anxious.Try: "He wouldn't want treatments to extend his life" + explain how you know that. @AGoodDeath
Patient tip: If consulted about another person's wishes at end of life, take some time to consider what they'd want. You can check with family/friends. It can help to write a letter to the doctor, instead of explaining in person - this gives you time to get it right. @AGoodDeath
Patient tip: It's hard to say your relative would not want life-prolonging treatment but remember: it's what THEY want that matters - you're honouring their wishes. And it's the doctor's decision, not yours (unless you're the patient's Health+Welfare Attorney). @AGoodDeath
Patient tip: Your friends+relatives will find it hard to represent your wishes at end of life. It's painful to think about (+ drs don't always listen). Help them out. Write an Advance Decision and Advance Statement. Easy to do here: compassionindying.org.uk
Patient Tip: Asked abt life-sustaining treatments for a loved one? You must consider the person's own values, wishes, feelings+beliefs, what they would want, what they wld take into account in making this decision for themselves. It's the law: see 4(6): legislation.gov.uk/ukpga/2005/9/s…
Patient Tip
Decisions about life-prolonging treatment for loved one? Tell the doctor what you think person would have decided, with whatever evidence you have - what they said, way they lived.
You are part of the decision. It's the law: see 7(b): legislation.gov.uk/ukpga/2005/9/s…
Decisions about life-prolonging treatment for loved one? Tell the doctor what you think person would have decided, with whatever evidence you have - what they said, way they lived.
You are part of the decision. It's the law: see 7(b): legislation.gov.uk/ukpga/2005/9/s…
If doctors disagree with yr view about life-sustaining treatment for your relative, ask for a formal Best Interests meeting. Everyone "engaged in caring for the patient or interested in his welfare" can be involved. Information should be shared by clinicians + by family/friends.
Occasionally, doctors who disagree with family members' views about the patient's best interests will arrange for an IMCA (Independent Mental Capacity Advocate) to be appointed to represent patient wishes. This can be GOOD for patient - I recommend welcoming + working with IMCA.
Patient Tip: I support people with severely brain-damaged friends/relatives in vegetative or minimally conscious states. Nobody expects to be in this state + few have made advance plans. Decisions about life-sustaining treatment are painful for eveyone. Plan ahead! @AGoodDeath
Patient Tip:If you don't want attempted resuscitation (CPR) under any circumstances you should complete an Advance Decision to refuse this treatment, AS WELL as asking your doctor to complete a DNACPR form. The form doctors complete isn't legally binding. Your AD is! @RCPLondon 
Patient Tip: Your doctor might be pleased and relieved if you ask about "Do Not Resuscitate". Doctors know CPR often doesn't work + can leave the patients with brain damage. Your doctor might have been wanting to raise DNACPR with you but didn't have time - or was scared to.
Patient Tip: If you want to refuse treatment that might prolong your life, it can help your doctor if you start by saying that you've thought about it carefully + read information they'd consider "reputable" (e.g. "I've read the NHS advice": nhs.uk/conditions/end…
Patient Tip: Help your doctor feel you're making an INFORMED decision to be "not for resuscitation". Explain you've read NHS info about "What happens if my heart stops" + take copy in to consultation. Here's the link for Yorkshire info booklet (+ form) : yorkhospitals.nhs.uk/our-services/g…
