It is almost an oxymoron because the tool is used to give you control for end of life care. Circumstances can swing dramatically from what you anticipated calmly filling out a form at your doctor’s office, to the chaos and drama of the real event. A study in “Cancer” from Rutgers, 2024 found dramatically different management of end of life between oncologists who are “high” prescribers with chemo up until last days and those with less aggressive approaches. It found that patient wishes were NOT the true directive.
Some real advice may be helpful here for you and your family as we all strive for comfort and peace. Do fill out the living will since it is a legal document and must be abided. I have been in the middle of chest compressions when they were stopped when the directive was located. If you don’t have one, the hospital and EMS will do everything, when what you really need is a hand to hold and soft words to be spoken.
Thank goodness more is being written about doing less chest compressions. I am in favor for drowning or witnessed heart attack, but in cancer care especially advanced disease and frail and elderly, palliation and comfort is best. Oxygen and IV fluids can be given, but aggressively attacking the body should be chosen carefully. No one wants to pass in the glaring harsh lights of a hospital. Even the Pope is trying to get to the Vatican if he can be stabilized, even for just a short time. Patients are more comfortable in hospice or at home with loved ones present. Families can not always handle the situation which makes bringing in hospice care a perfect solution to give support and medications.
Just because there is always a new drug, therapy, device touted doesn’t mean it will turn things around. Hail Mary is meant to be a devotion not an end of life last ditch effort. The real miracle will be crafting peaceful and loving moments at the end. Be engaged. Show up. Get medical power of attorney so you can be an advocate with legal strength and do it early, not at the end. You want to avoid the default of hospital staff “doing everything” because without clear direction, legally that is what they will do, unless the hospital medial ethics board is brought in.
When we are diagnosed with a life threatening disease, we search for Docs who will fight for us, but should this be the directive at the end? Ask for a hospice or palliative care service to take over. It is my best recommendation for comfort. As a former Hospice Medical Director, I will affirm that the nurses’ skill set is perfect for softly and peacefully guiding the body and mind to find rest.
Finally, please do not speak in front of the patient. Hearing is the last sense to go, so even in the unconscious, they hear you. Speak loving, calming words and hold their hand. What a blessing if we all have loved ones and comfort when our time comes. Your involvement, instead of leaving to the Doctor or hospital’s management will be a great source of peace for you as well. God Bless.