What Bali Taught Me About the Importance of Advanced Directives
When I arrived at the gym, the electricity had been off for three hours. The treadmills were idle, and only people-powered-machines were raising heart rates.
I half-heatedly pumped a stationary bicycle. It was like exercising in a sauna with no fans or air conditioning, and in tropical Bali that means hot hot hot.
I left the gym early.
Driving back through town, the traffic came to a standstill to let a cremation procession pass by. This is one of the reasons I love living in Bali – you never know when a procession for a temple ceremony or cremation will sequester your life, giving you pause to leave your thoughts aside and be in the moment.
I opened my window to let in the full force of the gamelan orchestra’s deep gong vibrations and ear piercing cymbals rush into my heart.
Different Takes on Death
Balinese cremations are not solemn affairs. They are full of energy as the deceased is carried in a gold gilt tower atop a palanquin, which rests on the shoulders of about a dozen men.
The men shout, run and turn the tower to confuse the spirit of the person that may be hanging around. The community walks quickly with purpose for this most important of life’s rituals – a chance to be reborn into another incarnation.
The procession passed and traffic slowly advanced, avoiding stragglers at the end of the line. As I rolled up my window again, thoughts of death, and how differently it’s perceived by different cultures, came bubbling up. In Bali, death is celebrated as an important rite of passage.
In the West, death is hidden and almost thought of as a mistake and something that happens to others. We don’t like to think about it. But as responsible people in our wisdom years, we must make choices for ourselves – now while we’re fully cognizant.
If we’re caregivers we need to help those we care for make those choices too, before they’re no longer able.
When my husband, Bob, was 12 years into Alzheimer’s, he was hospitalized with pneumonia. Of course, antibiotics were given, and we followed the doctor’s orders. After a week Bob’s daughter came from Hawaii. He was worse, not better, so we took him home thinking it was a better place to die.
I had been so caught up in the ’emergency trance’ coming and going daily to the hospital that I’d not dug out Bob’s Advanced Directives, written twenty years before. I thought I knew what he wanted.
But then I saw, written in his own handwriting, that should he come to this situation, he wanted no antibiotics or heroics, but only palliative care. I felt I’d failed him. Seeing this evidence of his ultimate will was like a slap that woke me to be strong and advocate for his wishes above my own feelings and fears.
Advanced Directives are legal instructions that let your doctors, loved ones and advocates know what you want if you’re terminally ill, seriously injured, in a coma, in the late stages of dementia or near the end of life.
Without these directives, medical personnel must prolong your life, by artificial means if necessary. And once that happens, it’s very difficult for your loved ones to change that course, even if they know you wouldn’t have wanted it.
These documents are your voice in writing when you can no longer let your wishes be known. By doing this ahead of time, you can choose how you want to be cared for and relieve undue suffering for yourself and your caregivers. However, none of these documents go into effect if you’re still able to make your own decisions.
A Living Will is the part of the advanced directive that legally documents what treatments you would want and not want in given circumstances. Using different scenarios, it goes into detail about whether or not you would want resuscitation, ventilation, tube feeding, antibiotics or palliative care to name a few of the possibilities.
Durable Power of Attorney for Health Care
Another part of the advanced directive is a Durable Power of Attorney for Health Care. In this legal document you appoint a person you are close to and trust that will carry out your wishes in the Living Will.
You can also appoint alternatives if the primary person is unavailable. I have two sets of these papers – one in case I’m in the States and another in Bali, with different people appointed for each place.
It’s important to have these persons in place and who understand exactly what you want and don’t want. You need someone that will honor your wishes and advocate for you.
DRI and DNI
These legal documents state you don’t want resuscitation (DRI) if you go into cardiac arrest and that you don’t want to be intubated (DNI). Copies of these documents should be with your doctor as well as in your advanced directives file.
Thinking about our own death is not easy. It brings up a lot of memories and feelings, images and fear that we don’t want to feel. But if we’re tender with ourselves, it also allows us to know ourselves better, so we can understand and feel what we really want at our end of life.
By the way: Bob got better when we brought him home. It was almost like this was a practice run – a run that would be real a year and a half later.
If you haven’t already done your Advanced Directives, now is the time to begin. Depending on where you live, laws may differ so do some research or consult your lawyer to make sure you have everything legally in place.
Have you already done your advanced directives? If so, do you have any suggestions to encourage others to do this? If you haven’t, what is holding you back? Please join the discussion below!
Susan Tereba, an artist, jewelry designer and writer, has lived in Bali for 27 years. She had 14 years of experience as the primary caregiver for her husband, who had Alzheimer’s. Susan now writes and speaks with the goal of inspiring other caregivers for those with chronic illnesses. Please visit her website for more details.