Some folks won’t discuss ‘how they want to die’; but, if we want to prevent futile care and prolonged suffering, each of us needs to discuss what we want once the ‘Downward Spiral’ begins and the EOL approaches.
Every day we witness suffering because individuals have not had these discussions and their adult children often feel compelled to “do everything”; which, with modern technology and drugs, leads to prolonging unnecessary types of care and pain [be it physical, emotional, spiritual, or social pain]. We, physicians and families together, must accept responsibility for causing this, when we should be relieving it!
To help prevent these situations, particularly if you have a serious chronic disease, here are four critical questions everyone should consider [taken from Dr. Atul Gwande’s book, Being Mortal]:
- What is your understanding of your current condition? [what have the doctors told you; do you understand there is no cure; have they told you the prognosis?]
- What are your goals when your health gets worse? [we need to avoid the false hope that the problem will go away – it will worsen; so, is the goal be ‘comfortable’ or ‘accept more suffering ’]
- What frightens you most about your health situation? [the possibility of losing memory, not being able to work or look after yourself, uncontrolled pain, smothering, or what?]
- What are you willing to trade-off, to sacrifice or give up, just to stay alive? [would you give up gardening, or toileting yourself, or sitting on the porch? Would you accept living in a nursing home?].
Clarify these issues and let everyone know your wishes. Then, complete an Advance Directive, which includes these preferences, and appoint a Healthcare Proxy you trust.