Help Guides - Planning Ahead

An Introduction to Planning Ahead for End-of-Life Decisions

Here you are, knee-deep in the most awful situation of your life, and you’re being asked to make major decisions every day.  Life and death decisions.  When you’re exhausted and emotionally drained.  It’s ironic, but it is desperately important.

Although it may seem strange at first, these preparations can give everyone peace of mind.  You may write out your funeral service, appoint a healthcare proxy, or complete Advance Directives. These are ways for you to lessen decision-making burdens on your family, and to know that your wishes will be respected.  You may not know how to broach these subjects with your loved ones, or they may have made it clear they do not want to have those conversations.  This is a place where talking to a chaplain or another trusted counselor  can be helpful.  A chaplain can help you find ways to begin conversations, or even participate in the conversation with you and your family.  Health care proxy regulations vary by state.

Advance Directives & Health Care Proxies

If you or a loved one have been hospitalized recently, you were probably asked to complete one. It can be jarring, as most of us associate advance directives with end-of-life care. At their most basic, advance directives are legal documents stating your wishes. Their job is to speak for you, in the event that you become unable to speak for yourself. Having advance directives doesn’t mean you are going to die, and it doesn’t mean that you no longer get to make your own decisions. Advance directives are simply a way for your voice to be heard, even when you cannot speak for yourself. Likewise, your advance directives can be changed as your preferences change. They are not set in stone once and for all.

Generally speaking, advance directives are made up of two separate documents: a living will and a health care proxy (or durable power of attorney for health care).

  • The living will is where you would document your preferences for health care. This could be as general or as specific as you wish. Some people use their living will to describe the things most important to them – “My independence is the most important thing I have,” some people write, or “being able to interact with my family – to know who you are, and what’s going on around me – is my priority.” Other people wish to state specific preferences for specific medical scenarios. Commonly-addressed issues in living wills include artificial nutrition and hydration, the use of breathing tubes (respirators), attempts at resuscitation, and use of blood products. Why should you have an advance directive? Because, in the event that you’re unable to speak for yourself, your medical team is going to ask your family what you would want done. An advance directive is a gift to them: a message in a bottle that helps them know that they are doing what you would want.

  • A health care proxy, or durable power of attorney for health care, is a way for you to stipulate exactly who you would want to make decisions on your behalf, if you were unable to. Again, appointing a health care proxy does not mean that you no longer allowed to make decisions. It only means that, in the event that you are unable to speak for yourself, your healthcare team knows who you want to speak for you. Imagine you’re the captain of a sports team, but you have to step away in the middle of team practice. You wouldn’t walk away without telling the team who’s in charge, would you? Of course not. You’d say, “Joe, you’re in charge until I get back.” That way everyone knows who is speaking for you, and things remain calm in your absence. The same is true for your family. Appointing someone specific helps everyone know what’s going on.

Who Should I Appoint as a Health Care Proxy?

Appointing a health care proxy is not a popularity contest. It’s not a way to proclaim which child is your favorite, or which sibling you like the most. In fact, many people decide to appoint someone who isn’t quite as close to them as their healthcare proxy – a close friend, a cousin, a lawyer – as a way of removing that burden from loved ones. There is no right or wrong choice here, but whoever you choose should be a person in whom you are totally confident.

The Importance of Communicating about your Healthcare Proxy

So you’ve written your wishes in your living will, and you’ve appointed a healthcare proxy. Done? No! You have a very important step left to take: you must talk to the people involved. If you leave Joe in charge of the team practice, but have never told Joe what your plans were for the day’s session, Joe won’t have a clue what to do. Likewise, if you appoint a healthcare proxy and never talk to that person about it, they’ll be floundering when they’re called. These aren’t easy conversations to begin, and some people may push back against you broaching the subject. A chaplain or another trusted counselor can help you strategize for these scenarios. Because it is desperately important that everyone be on the same page, as much as possible. And that includes your physicians as well.

Dealing with Conflict During End-of-Life Situations

With decisions come conflict. Conflict between family members, perhaps, or conflict between medical opinions. Or, perhaps, conflict between what your faith tradition teaches and what your doctor is suggesting. Some will try to downplay what a huge dilemma this can be. But in this moment, you want more than anything to do what is Right (with a capital R). You are making decisions about how you, or your loved one, will live and die. These are not small decisions, and the consequences are pretty major. If you are struggling to make decisions that are in keeping with a particular religious tradition, here are a few things to remember, as you wrestle.

1.

You are (probably*) not an expert on the teachings of your religion. Most of our religious traditions have centuries of teachings behind them, so what we know is often just the tip of the iceberg. Before acting upon what you think is a hard and fast teaching of your tradition – especially if it goes against what your heart, gut, or doctor is saying – bring your faith leader into the conversation. They are the experts on the teachings of your religion.

*In the event that you are an expert on the teachings of your religion, bear in mind that that is not the role in which you are currently functioning. Doctors are forbidden to treat their own family members for a reason: we cannot be both the objective expert and the patient or family member. Even religious leaders need advice from religious leaders. If you do not have a colleague you trust, you might reach out to a chaplain for a neutral, but understanding ear.

2.

There are a dozen people around you who are also (probably – see above) not experts on the teachings of your religious tradition. Many well-meaning people will see you struggling and want to help. They will tell you what they did, in a similar situation. They will tell you what they think your religion asks of you. If their input is helpful, good. If it is not, it is ok to tell them so. At the end of the day, you, and you alone need to feel comfortable with the decisions you make.

3.

This is one of the times that a chaplain or another trusted mediator is essential. Chaplains are trained in both health care and spiritual/religion issues. They will not tell you what your religion teaches, but they will help you sort out the situation in front of you. What’s more, they are trained in communication and group dynamics, so they can help you navigate the family meetings and help you formulate questions for your medical team. They can advocate on your behalf and help you understand the options before you.

Here are more resources on planning for death and dying:

PREPARE – the free, new interactive, easy-to-use, advance care planning website that shows people, through videos and a step-by-step process, how to have the conversation about what matters most in life and how to prepare for medical decision-making.

Caring Connections – for Advance Directives information including for every state

Center for Practical Bioethics

Five Wishes – talking about and planning for care at the end of life

Legal Guide for the Seriously Ill – Seven Key Steps to Get Your Affairs in Order published by the American Bar Association on Law and Aging for the National Hospice and Palliative Care Organization.

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