I sometimes have a hard time bringing up advance care planning, goals of care, and wishes around resuscitation with patients and their families. Is it because I'm afraid?
Nope! I've done it so much and make it part of the admission routine. And, I enjoy it because I think it is an amazing thing we can do to discuss and honour someone's wishes. Sometimes expectations are unrealistic but that is usually caused by lack of knowledge about what resuscitation can do and what it cannot; it is a pleasure to educate and also to provide my medical advice, as I would around any other issue.
Usually, it's challenging because the patients I see are often geriatric and this often comes with some barriers to communicating. Some of them are in a state of acute delirium. Some have advanced dementia or cannot speak due to aphasia from a stroke. A few have extreme deafness and blindness to the point where no aid can help us 'talk' clearly together. Many, in the big city hospitals, do not speak English or French (our National languages). Interpreters are sometimes available for other languages, but not often in a timely way, and few of them speak unique dialects that some patients have.
With those barriers, often we rely on their family members, usually spouses or children, to help translate or to help us understand what the patient's goals and wishes for end of life care might be. Sometimes it is very clear and has been laid out in an Advance Directive or in a conversation with family. But often, it's something that "never came up."
Families often find it distressing. Many say "in our culture, we don't talk about that." Or "oh, we don't want to SCARE mom or dad." I usually gently insist, reframe the discussion, and ensure they realize the importance and routine nature of it.
Discussing dying doesn't mean someone is dying, or that we are giving up on them, or that we will not treat them to the full extent that is appropriate.
Some doctors, who might be labeled as "too squeamish" to discuss goals of care, simply don't do it, which I think is unacceptable. Bur rather than call them names, we need to find out why they aren't having end of life discussions and empower them to feel comfortable and competent at doing so. Maybe they think it takes too long, maybe they worry they can't help the patient make an appropriate decision, or maybe they just need to have some mentoring to learn how. Most of the time they say "the family thought it would be too distressing."
Fortunately, this issue has been explored and we should fear not: Trying to avoid causing psychological distress isn't a legitimate reason to skip talking about end-of-life care!
Studies, like this latest one in The Journal of Pain and Symptom Management, show that Advance Care Planning doesn't make people hopeless or anxious. [you'll need an institution subscription to access the full accepted manuscript, though the abstract is pretty clear]:
Engaging in ACP with online planning tools increases knowledge without diminishing hope, increasing hopelessness, or inducing anxiety in patients with advanced cancer. Physicians need not avoid ACP out of concern for adversely affecting patients’ psychological well-being.
To provide patient-centred care, we need to talk to patient (or their substitute decision maker), not around them. If you are a health care provider, don't be afraid; ask them head on about their goals of care and make recommendations about what is or isn't medically appropriate. You can do it!