By Mary L. Flett, Ph.D., December 3, 2017
Some things are awkward to talk about (like having food stuck in your teeth). Some things are uncomfortable to talk about (like sex). Some things nobody wants to talk about at all. Hard conversations are the ones you know will be difficult to start, much less get through, without feeling angry, uncomfortable, hurt or afraid — or for that matter, any other negatively charged emotion. Yet, these are conversations that most need to be uttered just because they are hard.
One of these is what do you want to do about dying.
Almost to a person, folks I know are ‘planning’ on dying at home. Yet very few of them have taken the necessary steps to make sure that happens. Here’s what I mean. For you to die at home in your bed, you should have already discussed and completed:
- Durable power of attorney for health care
- Will or Trust (funded and executed)
- Provider ordered life sustaining treatment (POLST)
- Caregivers willing to care for you at home
- Buy-in from primary care, spouse, children, partners, friends
- Written instructions for your wishes
The first two are issues that require you to at least consult with an attorney or paralegal that knows and understands advanced care planning in your state. The third requires that you have a conversation with your primary care provider. Yes, it is going to cost you some money. Probably less than that new iPhone.
The last three require that you have hard conversations with your loved ones. We’ll go over these in Part II next week.
Durable Power of Attorney for Health Care (aka Advanced Care Directive)
The durable power of attorney is a legal document that gives decision-making power to someone else when and if you can’t or don’t want to do it yourself. This person will make decisions on your behalf using the guidelines you have chosen The key here is that the decisions are being made by someone on your behalf that you have identified.
I encourage you to really think this through. Maybe you think your son or daughter is the best one to make these decisions because s/he is your child. But does s/he have the skill set to remain strong and objective while being bombarded with questions from nurses, doctors, and social workers asking them to make decisions that may have consequences like your being in a nursing home for the next 5 years on a respirator and feeding tube? Does s/he have a good understanding of what you want because you have had many heart-to-heart conversations about all this? Are there others who might have a different point of view who would try to influence or change your child’s mind?
In the last 10 years, the United States has seen a shift in end-of-life decision-making. One initiative that has gained traction across the country is the POLST. Unlike a durable power of attorney for health care, this is a medical order that gives instructions to emergency response personnel on what you want to have happen in the event of a medical emergency. (Check out POLST programs in your state to see what is going on locally.)
Because the POLST is a medical order, emergency personnel won’t automatically start life-saving interventions if you or someone else calls 911. If you are in a hospital or nursing home, the POLST will act as standing orders regarding how to proceed as your dying process continues.
It is sort of a belt and suspenders thing. You want both the DPH-HC and a POLST to insure your intentions are carried out.
Wills and Trusts
The POLST and the DPA-HC will cover your choices up until the time you die. After your death, your wishes are managed using a Will and/or Trust. These legal documents are designed to make sure your assets (house, bank accounts, and land) are managed and distributed the way you desire. They are used to handle the tedious details of death (paying off debts, closing bank accounts, selling property) that you no longer can do because you are dead. So, while you are alive, you appoint someone to carry out your wishes.
My Story
I am especially passionate about folks having these conversations because I learned the hard way what happens when there are no clear guidelines in place and when all parties aren’t on board. My husband and I had discussed what we wanted to happen if either of us got sick. He had diabetes, and was experiencing a decline in his overall health. He was on the verge of going on dialysis when he had an episode of kidney failure. He had clearly stated to me that he did not want any extraordinary measures – just comfort care – and so had signed a do-not-resuscitate order (DNR). This was on file with the hospital.
I called 911. We went to the ER. The ER doc said, “You have a DNR, how do you want us to proceed?” My husband, still fully conscious and frightened by the reality of what was going on, said, “Revoke the DNR!”
He was admitted to the hospital with total kidney failure. While in the hospital, he acquired an infection that rapidly caused him to go from worse to being on death’s door. He became septic and was no longer able to make decisions for himself.
We had him transferred to another hospital where he spent two weeks in Intensive Care. He was transitioned from ICU to a cardiac care floor where he was put on dialysis. He never recovered his ability to made decisions and wavered between being able to recognize his children and me and being totally out of it.
His children and I had never shared a close relationship, and my husband had not had the hard conversation with them, so we were literally on opposite sides of the bed trying to decide what would be best. In spite of knowing what he wanted, we were unable to see those wishes carried out.
Three weeks after admission to the second hospital my husband died of heart failure. The doctor called me and said, “We did everything we could. We did CPR for 45 minutes, but could not bring him back.” The irony here is that in the many conversations my husband and I had about what kind of care he wanted, he was very clear that he did not want CPR.
Since his death I have gone over what I could have, should have, and would have done differently. I am making sure that I have the hard conversations with those who I am asking to make the journey with me so that I can insure that my wishes are clearly understood and carried out. More about what I have in place next week.
I hope you will consider doing the same.
Thanks for reading.
