Nobody wants to think about dying. But planning for the inevitable well in advance allows you to control the care and treatment you receive, even if you're unable to communicate with your loved ones or healthcare team.
"Planning your end-of-life care is important because it helps you live – and die – on your own terms, and eliminates family feuds that can happen when others have to make critical healthcare decisions for you," says David Mandelbaum, MD, FACS, medical director of Franciscan Health's palliative care services and co-medical director of Franciscan VNS Hospice.
First is the living will, where you establish rules for your care. The second part is designating someone to make decisions in real-time for you in the event you're unable to speak for yourself. This person is called a healthcare proxy or representative, or a medical power of attorney.
"When you're diagnosed with a critical, life-limiting illness, make sure to detail your end-of-life decisions in a living will," says Mandelbaum. "In fact, all adults should identify at least one healthcare representative to make decisions for you when you can't make them for yourself. Such situations, like getting in a major car accident, for example, can happen at any time no matter how healthy or young you are."
Writing a Living Will
In a living will, you can map out your medical decisions. This includes which interventions and procedures you would and wouldn't want to receive if you're seriously ill.
Rather than detailing every possibility, it's important to write a living will in more general terms like: "I don't want to be kept alive by artificial means if I'm in a coma." Once you've created a living will and designated a healthcare proxy, make sure there's a copy in your medical chart so your healthcare team knows your wishes and who to contact.
Choosing a Healthcare Proxy
It can be difficult to think about scenarios in which someone else would need to make a medical decision for you, especially when you're not sick. That's why choosing a healthcare representative is the most important part of planning your end-of-life care.
Every state has their own laws about who can act as your health care proxy, if you haven't already designated one. In some cases, the law allows all first-degree relatives to have the same authority, which may require your family to agree before doctors can take action. Or, your state may designate a relative from whom you are currently separated or estranged.
Designate who you want to represent you so you can feel confident that someone you love and trust is making your medical decisions. Then, be sure to have a conversation with that person and make sure they understand and agree to abide by your wishes, even if they run counter to their own.
In addition, tell loved ones, family members and your doctors who you have selected as your healthcare proxy and what you want for end-of-life care.
Top Things to Consider
The most common medical issues that arise during end-of-life care involve artificial means of breathing and eating, reports Mandelbaum.
Before you rule out ventilators and feeding tubes, consider that there may be situations in which temporary assistance from those devices could help you heal. For example, if you have chronic obstructive pulmonary disease (COPD), you might be hospitalized for pneumonia. A ventilator could help you recover from pneumonia and return to your daily life. Another scenario is if you have a stroke that causes you to have trouble swallowing. In that case, a feeding tube could provide nutrition while you recover.
If you don't want to be kept alive on machines, a good way to phrase this in a living will is: I would not want to be sustained for the rest of my life by artificial or mechanical means. This indicates that you're willing to accept temporary measures in order to recover, but don't want them to be used permanently.
In this example, note that it would be up to your health care representative to determine what a reasonable length of time on assistive devices would be, taking into account:
Severity of the illness
Your overall age and condition
Reassess Your Advance Directive
"It's important to periodically review your advance directive or end-of-life care plan, especially as your condition changes", says Mandelbaum. "What you thought you may want in terms of interventions or aggressive treatments can change as a disease progresses. Your living will and healthcare proxy should be updated accordingly."
Putting It in Writing
An advance directive is a legal document that you can draft on your own. Forms and directions can be found on your state's department of health website. For Indiana residents, you can find more information and the necessary forms in the advance directives resource center. In Illinois, visit the advance directives web page.