The doctor says it will be a matter of weeks. Is there anything more I need to know or do?
This week I had the privilege of saying goodbye to a dear client. As he faced his last days on earth we went over the plan he had carefully made some years ago and all was in order. He felt at peace and told me he could turn the key and lock the door to his house knowing all was well. Then we discussed true end of life decisions and the need for him to communicate that he wanted maximum pain relief, even if that meant he would sleep at the end, and to get his cancer doctor to state that in his treatment orders.
How happy my client was that so many came to say goodbye – childhood friends, college buddies, accomplished professionals he had worked with, students he had taught, and his church family. He joked and ate his dessert first as his appetite started to fail. He looked forward to seeing his wife who had passed some years earlier. Sadly I arrived at his bedside to hear that his request for pain medication went unaddressed for several days. He was beyond uncomfortable. With my prompting his health care agent made inquiries, but the minutes dragged into hours. Finally the pain relief came. I received word my friend passed sweetly as I finish this writing.
About 80% of all patients are not able to make their own decisions about care at some point in time due to serious or final illness. About 59% of all adults take the time to express their wishes through living wills, the Five Wishes, and health care powers of attorney. I strongly recommend the later document for adults of all ages, because one never knows when incapacity will strike and these documents can be customized for so many situations. Many mistakenly believe signing a health care proxy means only choosing no heroic measures and no artificial life support so you can die if you are permanently comatose or there is no hope of recovery. But a health care power of attorney can be written to:
- State you prefer a trial of treatment to allow doctors to determine if improvement is possible;
- Consider specific treatment options like blood transfusions, antibiotics to cure infection and thereby prolonging an existence you might otherwise find undesirable, dialysis, symptom and pain management;
- Allow your agent to execute with your doctor a DNR (Do Not Resuscitate) and DND (Do Not Incubate which would involve a tube inserted into your throat and the use of a ventilator);
- Cover tissue and organ donation;
- Discuss hospice care, which is centered on palliative care, where the goal may no longer be to cure but to relieve suffering, minimize pain and deal gently with the psychological angst of dying, and relieve caregiver stress.
- State if you really want to die at home knowing your loved ones will continue to live there. Hospice care is available in nursing homes and home settings in some areas of the state.
- Address many situations, stages of life and illness;
I encourage you to address these matters formally in writing and informally with your health care agent. Your agent should be able to:
- Communicate clearly,
- Ask simple questions like: What medication is that? What is it for? Who ordered it? What is the dosage and are there any side effects I should look for? Such questions could prevent serious medication and other hospital errors;
- Alert providers to your health baseline, including any loss of hearing, poor vision, mental illness, name and food preferences
- Know or write down your current medications and being able to repeat these to multiple providers;
- Understand the hierarchy of hospital staff – CNA, LPN, RN, physician’s assistant, resident, primary care and specialists, and how to utilize social and case workers;
- Advocate your wishes.