It’s is hard to think about, and even harder to talk about, but chances are that, someday, you will not be able to make your own medical decisions. It may happen suddenly – the result of a stroke or a serious accident. Or it may be predictable – a final stage in a terminal illness or degenerative disease. How do you want decisions made when you can no longer speak for yourself?
Miriam
The doctors announced that Miriam’s cancer was in remission. She was released from the hospital and everyone was excited that she would be going home; a live-in caregiver was arranged to help her with cooking, shopping and cleaning until she was back on her feet. But then the cancer returned, and a case of pneumonia sent her back to the hospital.
Everyone assumed she would get better and return home.
But she didn’t.
She deteriorated rapidly and, within a month, she lay dying in the hospital, uncommunicative. The doctors did everything they could to prolong her life: needles, tubes, intensive care, a ventilator.
Except, she didn’t want her life prolonged. She didn’t want to suffer. She had expressed as much to her children, and her eyes pleaded to let her die. But it was too late. There was nothing in writing. Nothing legal. No advance directive or power of attorney. We all advocated fiercely for her – fighting for her right to die gracefully – but our power was limited, ultimately overruled by a “do everything” medical system where the default is to prolong life by all means possible.
Miriam’s final days were marked by tension, anger and despair; a far cry from the dignified and comfortable death she had envisioned for herself, and a needless trauma for her children.
Yitzhak
Yitzhak is 92. He has congestive heart disease, has difficulty walking and gets confused at times. He lives at home with a full-time caregiver, and receives regular medical care through Kupat Holim home care services. Yitzhak has strong opinions about his end-of-life: when his time comes, he says, he does not want any medical intervention that will prolong his life. He wants to die at home, without pain. He has expressed his wishes to all around him – to us, to his family and to his caregiver – and he has signed and filed all the necessary paperwork to ensure that his wishes are respected. Indeed, everyone knows that should something happen, they will call home hospice, not an ambulance, and Yitzhak will die at home. With dignity.
Don’t keep end-of-life wishes to yourself
“Deep down, most of us have a sense of how we’d ideally like the end of life to look”, says Dvora Corn, B’Lev Shalem’s Strategic Growth Consultant. “We have a feeling about the quality of life that would be worthwhile to prolong, and when we would want to accept the inevitable with grace and dignity.”
But it isn’t enough to leave it as an unspoken thought. Whether you prefer a quiet death far away from a hospital, or the most aggressive care possible, document your wishes in an advance directive, a document that allows you to convey your preferences about end-of-life care, and appoints someone to make treatment decisions for you if you cannot make them yourself. Be sure to clearly articulate your wishes to the person who you have named as your proxy, and make sure he or she understands you. Never assume that a loved one automatically knows your values and wishes.
Keep in mind that while filing an advance directive significantly increases the chances that your wishes will be honored, it’s not a 100% guarantee. Nothing is.
The end-of-life medical documentation you need
Advance medical directives
Advance medical directives (hanchayot refuiyot makdimot) enable you to specify which treatments and interventions you do/do not want to receive in the case that you are terminally ill and unable to communicate your wishes.
The form can be downloaded from the Ministry of Health’s website, filled out and filed with them. Upon checking the forms and declaring them valid, the Ministry of Health will send you a card to keep with you, indicating that you have advance medical directives. Medical staff managing a terminally ill patient’s case are also supposed to – by law – check with the Ministry of Health’s databases to see of the patient has advance medical directives.
However, don’t rely on that. Especially in emergency cases, medical staff may not think to check or have time to check before making a decision. Keep a copy of your advance medical directive form in an accessible location, and make sure members of your family and care team know where to find it (or have a copy themselves).
Advance medical directives must be renewed every five years. Filing a new advance medical directive will automatically update the old one. You can also file a cancellation order to cancel it at any time.
Health care proxy (medical power of attorney)
In general, a power of attorney (me’yapeh koach) gives another party the legal right to make decisions for you. A power of attorney can be granted in any number of situations, from appointing someone else to sell your car to giving someone the authority to manage your bank accounts and investments.
A medical power of attorney gives someone else the ability to make decisions about your health care, in the event that you are unable to communicate or considered unfit to make decisions. Medical power of attorney has three different levels, ranging from ability to decide only about whether to start life-prolonging interventions all the way to the ability to make any decision about accepting or abstaining from treatment.
Like the advance medical directive form, the medical power of attorney form can be downloaded from the Ministry of Health’s website, filled out and filed with them.
Just like advance directives, medical power of attorney must be renewed every five years. Filing a new power of attorney will automatically cancel the old one. You can also file a cancellation order to cancel it at any time.
Make sure to keep your wishes updated
If there is a conflict between advance medical directives and power of attorney, advance medical directives are usually given priority. An exception may be if the power of attorney was appointed significantly after the advance medical directives were filed. In that case, a special committee may convene to decide which one takes legal precedence.
If you do file both (and in this area, the more you can cover yourself, the more likely you are to have your wishes followed), make sure you keep everyone and everything up-to-date. You’ll prevent conflict, heartache, and the possibility of having the wrong set of instructions determine your treatment.
Talking to your parents
At this point, preparing your advance medical directives and powers of attorney may have moved to the top of your “to do” list.
But what about your parents?
In all likelihood it’s even more relevant for them, but how are you going to broach the topic?
Talk about it when it’s still theoretical (they’re healthy – there’s no imminent health crisis) and keep it as low-key as possible. Talk about how you’ve been reading and thinking about the topic, and how you’re going to file the paperwork for yourself because you think it’s an important thing to have. Make sure your parent is aware that in Israeli hospitals, the default will be intervention to prolong life.
This article gives great examples of low-pressure approaches to bringing up these topics with your loved ones.
Overcome the fear
Fear is the biggest obstacle to people asserting control over making end-of-life decisions. Fear of the end of life, of losing control. Children fear upsetting aging parents by bringing up the topic. Parents fear upsetting or burdening their children.
Don’t let fear stand in between you and a dignified end-of-life. Planning ahead is the key; planning helps ensure that you will get the medical care you want, avoid unnecessary suffering, and relieve family members of the burden of making difficult decisions in times of crisis or grief.
Talk to your parents. Sensitively, delicately. Understand them, their values and their wishes. Make sure everyone is on the same page.
The first step is the hardest. But it’s worth it. A graceful, dignified end-of-life and peace of mind about getting there: it’s one of the greatest gifts you can give yourself – or the one you love.