My 53-year-old aunt died last month from cancer. She had cancer for 18 months, but not once did it ever occur to her, or her husband, that this was a terminal disease. The doctor’s kept assuring them that cancer is “chronic, and there’s no reason why, with current treatments, she won’t live a normal lifespan.”

So, for 18 months, they both concentrated on the hope of keeping her alive, rather than the reality that she was actually in the last year of her life.

She had no Advance Directive, never completed a Physician’s Order for Life Sustaining Treatment (POLST), didn’t have a will, and had not had a conversation with anyone at anytime about what she’d actually want for end of life care.

I wish she was an exception, but I can look at both my parents and many other loved ones and say the same thing…in my family, talking about death or end of life is so taboo that bringing up the subject at all is fraught with the consequences of verbal condemnation and an outright shunning for weeks, if not months. When my aunt was dying, my uncle forbade family members to mention death in front of her. And, regretfully now, we followed his wishes because if we didn’t….well, he wouldn’t allow us in his house, or to talk to her on the phone.

So, in the last hours of consciousness, my aunt had all sorts of business to take care of…all, while in a morphine induced state of euphoria which was interrupted by stabbing bouts of uncontrollable pain.

The most important part of the business was giving Power of Attorney for Finances over to her husband because they had held separate bank accounts throughout their 25 year marriage. The first notary, who was called to witness the signing, refused, due to my aunt’s diminished capacity. On the second notary, the nurses withheld the medications for an extra 15 minutes so that she’d be awake enough to sign the paperwork.

But, after hospital discharge and sent home on hospice to die….well, we never had a coherent moment, again.

So, no matter how many times I asked her for preferences, or what we should do after she dies…she’d look at me blankly, then closed her eyes to return to sleep.

What happened to her body, her care, her money, her possessions…well, that was no longer her concern. My aunt was dying and the rest of it was up to us…well, actually me, because my uncle had also crossed the threshold into total incompetency.

I had no idea what she wanted. A chaplain? Candles? Music? Family members? Silence? Windows open/closed?
Religion? Chanting? Comfort? No clue. So, we improvised. Trying everything for awhile, and then moving unto something else.

After death…do we cremate? Bury? Where? How? Religous? I simply had no idea.

Without an Advance Directive, everyone looked towards her husband to lead the way…except in this case, he was incompetent, unaware of anything but his own pain. At one point, he asked that we investigate passage to Germany in the hope that a liver transplant would give her a few more weeks of life.

Without a POLST, we didn’t know whether she even wanted Hospice, or comfort measures…or had any personal preferences about medical care.

Without a Will, we had no idea where her money was, how it was to be allocated, or whether there were beneficiaries, other than her husband, that she might’ve preferred.

Without a conversation about death, we had no idea about after death arrangements.

So, instead of a plan…well, we had chaos.

Planning ahead no longer mattered to my aunt, but I am willing to bet that she would’ve been mortified to see the chaos that ensued around every decision that was to be made. I’m sure, in her heart, she would’ve spared us all this pain if she’d known what a difference it would’ve made to have made a plan with clear directions on personal preferences in all aspects of medical care, treatments, dying, and after death…as well as her estate, finances and dispersal of personal possessions.

It’s been six weeks since she’s died, and there are family members who are no longer speaking to each other. She was cremated, and her ashes placed in a mortuary niche. Only after the cremation occurred did we receive a phone call from her mother begging that she be buried in New York. Cremation, it turns out, is against the Russian Orthodox faith…except my aunt had never practiced her religion and no one believed it would matter to her. But, what we believed…we didn’t know for sure.

And, my aunt refused to tell her mother, or her sisters, that she had cancer at all. So, in the telling, we had to face the pain of them knowing everything at once.

If I had a lesson to pass on to all of you, I’d ask that you make a plan. It may not matter to you at all in the final throes of the dying process, but I can assure you that it will make all the difference in the world to your family.

And, it’s not just about dying.

Remember, that 50% of us are targeted for some sort of dementia. So, dementia could take away our abilities to plan for ourselves, leaving that task to others.

So, do it now.

I’m 55 years old. I have a trust, a will, and an Advance Directive. My children know my wishes of how I’d like to live as I age, and we talk frequently about personal preferences in all aspects of our being.

And, if I’m dying…well, I want to know because I want to make sure that my life is going to be the best that it can be up until the end. I don’t want to end up stuck on a chemo drip IV in the last week of my life in the hope that this one will be the miracle that will turn everything around.