House Call: Why everyone should plan ahead for end-of-life decisions

All of us sooner or later will be faced with a loved one’s, or our own, mortality. Health care is complicated, and decisions about advanced directives, power of attorney and medical decision-making regarding care near the end of life are often put off until a crisis occurs. This can lead to additional pain, confusion and anguish for both patients and family members. This column offers some guidance and assistance with understanding and working through advanced care planning.

Planning for end-of-life or serious medical events and clearly documenting your wishes ahead of time can ease the burden of decisions for loved ones later. It’s a critical piece of planning for the future and taking control of your own medical care, yet about 55% of Americans have not made their medical wishes known through an advance directive or living will.

Many older adults or those with a serious illness create advance directives, but unexpected events can happen at any age. Take the time now to make decisions about severe emergencies, care and end-of-life treatments, and discuss them with your family or friends.

In our medical practice, this is often done with the patient, a trusted primary care provider and designated family members during or after an annual well exam. Specific questions and guidance can be addressed by your primary care provider in context of your current and projected health outlook, medical diagnoses and your personal philosophy and ethics.

What do advance medical orders do?

Advance directives, trusts and living wills are legal documents that usually outline actions you want taken for broad possibilities like types of resuscitation procedures and life support.

Advance directive documents can clarify if you would want to start or stop life support or medical interventions and in what situations, including CPR, being on a ventilator, dialysis, nutritional support like feeding tubes, etc., but understandably usually are not “all inclusive” of every situation you might encounter. Things like organ donation and end-of-life caregiving can also be outlined.

You can also designate a Durable Power of Attorney for medical decision-making. DPOA designations for medical (and often financial) decisions are extremely important to have established in the event you should become incapacitated and unable to make decisions for yourself.

They do not involve giving up your medical decision making to someone else unless you are unable or lack the capacity to make those decisions for yourself. Your designated decision maker is usually a specific trusted family member with whom you have outlined your preferences during advanced care planning discussions.

Portable Orders for Life-Sustaining Treatment forms are voluntary, signed medical orders that are legal documents to directly inform doctors and caregivers on life-prolonging treatment if you are seriously injured or terminally ill and can’t communicate your medical wishes clearly yourself.

These forms have been adopted in more than 27 states and are usually placed in an easily visible location at home (i.e., on the refrigerator) so that Emergency Medical Services personnel can locate and follow those guidelines in the event of a potentially life-ending event that occurs outside a hospital or prior to medical interventions in the hospital. They can also help your loved ones understand and carry out your requests.

You can find advance directive and POLST paperwork and tools for making decisions online or at your provider’s office. Your health care provider is also a good person to discuss your specific situation and medical needs with and to answer questions about the outcomes for specific measures.

These forms are often reviewed annually and can be changed or modified at any time as situations change. A DPOA and advanced directives must be signed and either witnessed by two people or a notary public in Washington state. You may also want to visit an attorney to draw up the appropriate legal documents.

Discussing options with medical decision-maker

You’ll need to choose a family member or friend to make medical end-of-life decisions for you if you are unable, and then communicate your wishes clearly with them. Ideally, it’s someone who you can freely discuss your end-of-life care with, who you trust with decisions and your medical information and who can be there for you when you need them.

Once you’ve made decisions, you need to discuss them with family, caregivers and other loved ones so that everyone has a clear understanding of your wishes. I’ve had many patients with family members who may not always agree with a particular pathway of care.

A distant daughter or son might say, “Mom would want everything done.” even though they haven’t had contact in years. Another family member might say the exact opposite, “Mom would want just to be kept comfortable.” The person designated with DPOA has the legal authority to make those difficult decisions and help to settle conflicts.

Think about quality-of-life matters

Filling out an advance directive isn’t just about technical decisions, it’s a question of what you value in quality of life. Your parameters might be quality connection and time with family, friends or pets, activities from hiking to reading, caring for yourself and being independent and spiritual or religious considerations.

In my experience when discussing end-of-life care options with patients, especially if there is a known terminal disease such as Alzheimer’s or cancer, many patients focus on quality of life and not quantity. Being free from disabling pain and being close to and supported by family and loved ones is important to them; they often do not want heroics or extended life support.

Sometimes, we tend to stick to the road plan in place. But there may be points when a patient might want to pivot treatment based on quality-of-life goals. Discussing treatment options with a provider when there is serious illness can help clarify those options. As mentioned in previous columns, hospice services can be a crucial part of this discussion.

Refusing emergency measures like being put on a ventilator does not mean you won’t be cared for. Medical providers will use other measures to control pain, make you comfortable and care for you in other ways.

Revisit your medical wishes over time

It’s difficult to consider choices or withdrawing support from a loved one. Unfortunately, in this world no one escapes, and the time will come for all of us. This is why it’s so critical to make wishes clear ahead of time and discuss them with family and friends.

Being proactive early is the critical message. You also should make clear where this paperwork is stored and revisit the paperwork from time to time. Your choices may have been different at 50 years old than they will be at 80, and health situations may change. You always have the freedom to change your mind as your individual circumstances evolve.

The good news is you don’t have to plan for every possibility. These advance planning documents are meant as a guide to help you, your loved ones and your doctors make decisions about medical treatments to match your goals and values, even in emergency situations.

Understanding the range of options of life-prolonging medical treatment options and documenting your preferences can provide peace of mind to you and your family that plans are there ahead of time.

Dr. Jeff Markin is a family medicine physician practicing at Kaiser Permanente’s Veradale Medical Center.