Exploring Your End-of-Life or Palliative Care Options

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, a physician with Franciscan Health's palliative care services.

End-of-Life Planning For Yourself

In the American Journal of Preventive Medicine, researchers looked at the results of a national health survey. Nearly 8,000 adults answered questions about their lifestyle and well-being. They were also asked about palliative care. Only one-fourth said they had any such plans in place. Almost one-third said they had no interest or knowledge about the topic. 

No matter your age or health, it's a good idea to think about palliative care. You never know when you may face a medical emergency. Having a plan in place may improve your quality of life in the time up to your death.

Creating an End-of-Life Care Plan

End-of-life care is also known as advanced care planning. It starts with a legal document called an advance directive. An advance directive has directions for your doctor, loved ones, and others about the type of medical treatment you want if you can’t tell them yourself. Once you know why it's important to plan end-of-life care, creating the legal documents is relatively easy and doesn't require a lawyer.

Called an advance directive, the written plan includes two parts.

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," Dr. Mandelbaum said. "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 or in an palliative care situation.

For instance, you can choose whether you would want to be put on a ventilator to help you breathe. You can also list your wishes for tests, procedures, or medicines. 

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 palliative care planning.

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.

Decide and 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 palliative care.

Top Things to Consider For Your Palliative Care

The most common medical issues that arise during end-of-life care involve artificial means of breathing and eating, Dr. Mandelbaum said.

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:

• Diagnosis
• 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," Dr. Mandelbaum said. "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."

If you update your advance directive, be sure to give a revised copy to everyone who received the previous version.

Putting Your Advance Directive 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:

• Indiana: advance directives resource center
• Illinois: advance directives web page.

When considering options for end-of-life care, keep these points in mind:

• Make sure your advance directive follows your state's laws on palliative care. Some states call for such forms or papers to be notarized.
• Give a copy to your doctor, family members, and any others who you think should know your wishes.
• Tell all loved ones about your decisions to help avoid conflict.
• Carefully choose your healthcare proxy. Talk with that person about your decision. Make sure he or she agrees to the role. Your spouse or a close relative may not always be the best choice. He or she may be too clouded by grief if you are close to death.