Plan ahead for end-of-life decisions
They say chance favors the prepared mind. When I stay at a hotel, I check where the fire escapes are located. At home, I have a disaster preparedness kit. Preparedness is helpful for medical emergencies as well. Accidents and health crises can happen at any time. As uncomfortable as it can be to consider your own mortality, planning for your end-of-life needs well ahead of time is wise. It can unburden family and loved ones if they are left in charge of deciding for you and ensure that you get the type of care you would want.
Outlining your preferences
Preparing advance directives for health care is one of the best ways to make sure your loved ones and health care team know about your health care choices. These are a group of documents, including living wills and durable power of attorney, that cover broad treatment possibilities, like types of resuscitation procedures, artificial nutrition and life support. Advance directive documents can also include organ donor cards and end-of-life caregiving such as a preference to be at home, or even recommendations about spending on medical treatments.
These documents are about more than medical interventions, though. They are also about your personal definition of a good quality of life. What matters most to you? Is it spending time with family and friends, or being able to hike and bike? If you couldn’t do those things, what would your quality of life be? It’s a very personal question, and there are as many answers as there are people.
Some people might prioritize comfort, like being free from disabling pain, at the end of life and choose to forgo life support and certain medications that could prolong discomfort. Others might value sustaining life despite discomfort so they can spend more time with family. These are highly personal decisions, and there are no right or wrong answers. Refusing emergency measures does not mean you won’t be cared for. Health care providers will still implement care within the outlines of your advance directives.
Living wills
Health care directive documents (or living wills) spell out what medical interventions you would want and in what situations you would want them. They understandably can’t cover every situation, but they can provide guidance for some scenarios. For example, if you are likely to recover and regain previous levels of activity, you might consent to being on a ventilator for a limited time. If medical providers determine you’re unlikely to recover, would you still want to prolong your life with a ventilator?
Considering these scenarios through advance directives helps you decide what quality of life matters if your physical or mental condition deteriorates. The documents themselves communicate your wishes to your loved ones and to your medical providers so they can do their best to honor your choices. Having these in place can also help your family and loved ones by lifting some of the stress and heartache of making these decisions for you.
Designating a decision-maker
Because it is impossible to anticipate every possible situation at the end of life, you can also legally designate a person for medical (and often financial) decision-making if you are unable to make decisions for yourself with a durable power of attorney (DPOA). Many people assign a DPOA before they need one; it doesn’t give anyone else control of your medical and financial decisions unless you’re incapacitated. Ideally, you would choose someone you feel comfortable discussing end-of-life decisions with and whom you trust to follow through on them.
Deciding when to withhold or withdraw life support is a difficult moment and decision. Making your preferences as clear as possible supports your medical decision-maker to know they are honoring your needs and desires. When I speak with a patient’s designated decision-maker, they often report feeling stress and tension, not wanting to “make the wrong choice” and feeling the responsibility of the decision. At these times, I remind them that it is not their decision to make. Rather they are implementing what the person would have wanted. So making your preferences known is helpful both for getting the care you would want as well as reducing stress and second-guessing for your designated decision-maker.
Communicating your choices
Once you’ve made decisions, discuss them with family, caregivers and other loved ones so that they have a clear understanding of your choices and the existence of the documents. Discussing these decisions prevents surprises and confusion if those decisions are ever needed and gives you a chance to clarify choices and explain your rationale. That can be reassuring to loved ones.
Planning for those who are seriously ill
If you have serious chronic medical conditions, and especially if you wouldn’t want the most aggressive care, you should consider having your health care provider fill out a bright green POLST form (portable orders for life-sustaining treatment). This is a medical order that addresses emergency care for seriously ill individuals. Post it in a visible location like your refrigerator door or behind your front door. A POLST can inform emergency medical providers about the treatments, like CPR, breathing tubes and feeding tubes, that you would or would not want in case you can’t communicate during a life-ending or life-threatening emergency.
Consider cardiopulmonary resuscitation, for example. The “resuscitation” in CPR means that it is for patients who have died or are actively dying — there is no pulse, and they are not breathing. Unless instructed otherwise through documentation, emergency medical teams will pursue all available interventions, including the most aggressive care, like CPR. This intervention includes chest compressions that can crack ribs and is not always what patients want or what makes the most sense for their health situation.
End-of-life planning
You can find advance directive and POLST paperwork and tools for making decisions online or at your health care provider’s office. Your health care provider is also a good person with whom to discuss your specific situation and medical needs. They can answer questions about likely outcomes for specific interventions. These forms are often reviewed as health situations change, like when a patient is admitted to the hospital, and can be revised at any time. You may also want to visit with an attorney to draw up the appropriate legal documents. Don’t forget to let people know where this paperwork is stored.
Multiple studies have found that when patients learn more about health care services offered at the end of life, even ones that are “default” care, many say they would not want the most aggressive services. When talking with my patients, some will tell me that they “are a fighter” and “want to live as long as possible no matter what it takes.” Others say, “I have lived a good life” and “when it is my time, let nature take its course.”
Only about 45% of Americans have made their medical wishes known through an advance directive or living will. Many people complete advance directives as they age or if they have a serious illness. But medical emergencies or illnesses can happen at any age and not having a plan is a plan for default care that might not reflect your values. Communicating your choices and what quality of life matters to you is a critical piece of taking control of your own medical care.
Peter Barkett, MD, practices internal medicine at Kaiser Permanente Silverdale. He lives in Bremerton.
This article originally appeared on Kitsap Sun: How to get the care you want at the end of life
