Why talk about death? So that you can live your life the way you want to – right up until the end.
The last century brought us medical advances that were unimaginable when my grandfather graduated from medical school in 1927. We have antibiotics, chemotherapy, organ transplants, and clot-busters. We can prolong life – and, unfortunately, we sometimes also prolong dying and suffering. Many people feel strongly that they don’t want to die in the ICU or in a nursing home bed; they would rather forgo treatment than be sick and debilitated in the last weeks or months of their life. If that’s how you feel, then you can make your wishes known with advance planning.
There are several different documents to consider. Let’s look at them one by one. Please note that this applies only to the US; other countries have other requirements and different options.
LIVING WILL: What You Want
A living will describes your specific wishes for treatment if you are terminally ill and unable to make decisions for yourself. The living will be only be used if your physician determines that your illness is fatal and you can’t make your wishes known. If you can speak for yourself, the living will is not relevant. If your illness is not terminal, the living will is not relevant. In some states, two physicians are required to certify that the illness is terminal.
When you fill out a living will, you will specify what medical technology should be employed to treat you if you have a terminal illness – if there is no reasonable chance of recovery. “Medical technology” includes ventilators (breathing machines), cardio-pulmonary resuscitation (CPR), antibiotics, and feeding tubes, among other things.
If you find those terms bewildering, you’re not alone. These are complex decisions with significant consequences, and you may want some technology in some instances and not in others. It is always difficult (and sometimes impossible) to make clear decisions in a moment of crisis. If you make a living will, you can have peace of mind that your wishes will be respected and your loved ones will have the comfort of knowing they are making the choices you would have made for yourself. While a boilerplate living will allows you to say “yes” or “no” to specific technology, that is not always enough.
Those choices should start with your values. What makes life meaningful for you? What degree of disability could you tolerate, if recovery is possible? What technology will meet your goals? What should your loved ones consider as they make these choices? Dr. Levy will help you create a living will that accurately reflects your values and provides specific guidance for your decision-makers.
Why is this important? For one thing, the state may compel treatment you would not want. Although many states permit family members to make decisions in the absence of a living will, some states, including Pennsylvania, treat feeding tubes differently from all other technology and require written evidence of your wishes before anyone can refuse a feeding tube for you. If you want control over your medical choices, you need a living will.
DURABLE POWER OF ATTORNEY (MEDICAL PROXY): Who You Want
Who do you trust to make medical decisions if you can’t? Is that person your legal next of kin? “Next of kin” is most often your legal spouse (even if you are separated), or a parent, sibling, or adult child. A Pennsylvania state law defines who we can identify as next of kin; in most states, there is no legal guidance. You can name the person you want to make those decisions; if you create a durable power of attorney (or medical proxy form), that can be anyone you specify regardless of relationship. (You can’t name your physician or other members of your healthcare team).
If you are not sure who would be your official next of kin, or you don’t want that person making your decisions, you need to make that clear. Confusion about decision-making can delay appropriate care and increase the suffering of your loved ones if you are seriously ill. Dr. Levy can help you identify the appropriate decision-maker and create appropriate documentation.
Once you have chosen someone, you need to talk with them about your wishes. This can be a challenging conversation; Dr. Levy is available to facilitate these discussions.
Dr. Levy recommends the use of the Five Wishes, which contains both a living will and a power of attorney document. The cost of the Five Wishes document is included in the price of your consultation with Dr. Levy, and she will spend time explaining the form and helping you customize it to meet your specific needs.
MEDICAL ORDERS FOR LIFE-SUSTAINING TREATMENT (MOLST/POLST): When Time is Short
A living will is a guide for the treating physicians, who then direct your care accordingly. Emergency responders and other clinicians are often not allowed to follow directives in a living will without a physician’s order. If you or a loved one has a serious illness and you want to make sure your wishes are followed in an emergency and in every setting, you can talk with your doctor about the Medical Orders for Life-Sustaining Treatment. A MOLST, which is called a POLST in Pennsylvania, is an actual doctor’s order that must be followed by all other medical personnel, including paramedics and 911.
MOLST forms vary from state to state. Each one will allow you to designate whether or not you want CPR, antibiotics, and artificial feeding in various situations. If a MOLST form is appropriate for your situation, Dr. Levy will help you fill it out so you can take it to your physician to sign. She is also available to speak with your physician if necessary.
This will be so helpful to patients and families getting their wishes known talked about and ultimately enacted.