Monday Author: Susanne Skinner
Discussing death is hard. Planning for death is even harder. The passing of close friends brought home the importance of having your affairs in order. I live in Florida, a popular state for retirees and a very thorough state for end-of-life planning.
Wills and trusts allow you to speak for yourself when you are unable to do so. Approaching this task forced me to think about what I wanted. End-of-life directives are more complicated than I thought, and more detailed than I imagined.
Designing a good death transcends medical procedures and treatments and speaks to remaining connected to joy.
Ask the Right Questions
The impetus for this stems from Dr. Atul Gawande’s book “Being Mortal,” the most enlightening book on death I’ve read. End-of life-care is less about keeping people alive longer and more about ensuring quality of life. Discussing end-of-life issues is a conversation that creates a plan, but most people, including healthcare professionals, don’t do this.
Doctor Gawande encourages questions like, “What are you willing to go through and what are you not willing to not go through for the sake of more time?” and “What’s the minimum quality of life you’d find acceptable?”
Defining quality of life defines how you want to die. One quarter of all healthcare costs (especially Medicare) is spent in the last year of life. The most common trajectory is increased pain and suffering, not an improvement in length or quality of life.
These questions should be asked repeatedly because people change their minds. Knowing your options is important. Mortality is a hard discussion; having it before you need to benefits everyone. Waiting too long means decisions are governed by fear and false hope.
Plan Ahead for a Good Death
I am surprised at the people who do not have a will, power of attorney or end-of-life directives. Every adult should have these documents in place, well in advance of anticipated need. Two are critical.
First is the advance health directive, also called a living will. This document details your wishes regarding medical care you don’t want (feeding tubes, resuscitation), what you do want (antibiotics) and organ donation. When these documents are in place family and medical professionals know your wishes.
In my home state of Florida this is a detailed and specific document. Options are defined, reviewed, answered, and initialed. Living-will requirements are determined by the state you live in, as each has specific laws and forms.
The second document is a durable power of attorney for healthcare, also called a healthcare proxy. You choose the person you want to speak for you if you can’t speak for yourself.
For younger people without many assets a simple will is an option. A simple will and healthcare proxy can be created with online tools like LegacyWriter or LegalZoom. Complex arrangements like guardianship, trusts, and multi-generational planning need an estate planning attorney.
At the very least, write out your wishes and have them notarized. Some guidance is better than none at all.
The Right to Die
The term “right-to-die” means a person has the right to voluntarily end their life. It is designed for those with a terminal illness who believe in the ability to end their own life through assisted suicide.
The majority of states do not allow patients to end their lives, either on their own or with the aid of a doctor. However, in 1990 the Supreme Court ruled that patients or their designated healthcare agents, may refuse life-preserving medical treatment, including feeding tubes.
This is a controversial and emotional topic with ethical, moral and religious issues. Advocates for the right to die believe it should be left up to the terminally ill individual to decide when to end their suffering.
Only a handful of states have right-to-die laws: California, Colorado, Hawaii, Montana, Oregon, Vermont, Washington and Washington D.C. Terminally ill patients can receive a lethal dose of medication from their doctor who is legally protected when writing the prescription.
Most right-to die-laws require the patient to be expected to die within a certain period of time; be a certain age; and follow detailed consent guidelines.
When Medicine Can’t Save You
We live in the era of modern medicine, yet medicine has limits. This issue is gaining momentum as families confront the escalating cost of healthcare, especially for the terminally ill. Most of the costs occur in the final year of life and provide minimal benefit.
Healthcare professionals receive limited training in pain management and palliative care. Instead, they focus on delaying death with treatments costing thousands of dollars: chemotherapy, intensive care, drug trials, surgeries and prescriptions not covered by insurance. Because we don’t know when enough is enough, death still comes. The medical system fails us when it comes to death with dignity.
Death with Dignity
Most terminally ill patients know they are dying, yet doctors and family members fail to prepare them for the final stage.
These individuals have the right to determine procedures that will be followed when they can no longer speak for themselves. Even if they cannot choose to legally end their lives, they can request a death that allows maximum quality of life for the time that remains. Palliative care replaces curative care, quality replaces longevity.
The Hard Question
Doctor Gawande voices the hard question summarizing this dilemma. It is not how we can afford the expense the system demands to prolong death. It is how to build a healthcare system that helps dying patients achieve what’s most important to them at the end of their lives.
The process of dying is an active and ongoing one. Dying is the final thing you will do in your life. Do it with the grace, dignity and joy of a life well lived.