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.

Help Guides - Planning Ahead

Death, Dying & Bereavement

Experiencing the death of a loved one is one of the most profoundly difficult things you are likely to face. Chances are, it brings up a zillion different things for you, all of which are tangled up with themselves. What follows is by no means exhaustive.

Help Guides - Planning Ahead

Anticipatory Grief

Try as you might to stay in the moment and to enjoy every second you have with your loved one, chances are, your mind sometimes strays to that dreadful day when you will face life without them.

Help Guides - Planning Ahead

I’m Not Grieving, I’m Furious!

You might be imagining that soap opera bedside end of life scene, where everyone is quietly crying. But that may be the last thing you feel like doing. You may be boiling with outrage. Believe it or not, that’s grief too.

Help Guides - Planning Ahead

Laughing

One second, you’re crying, and the next, you’re…laughing?! End of life is often filled with reminiscing. Families gather, and stories start coming out. Before long, although you’re all filled with sadness, you’re remembering the time that mom sang karaoke at the church fair, or the ridiculous straw hat dad used to wear to embarrass the kids, and you’re roaring with laughter.

Help Guides - Planning Ahead

What to Do at the Bedside

You may not have much experience with death and dying. If you’re close enough to visit the person, you probably feel uncertain about what you should be doing while you’re there. Do you talk to them? Do you touch them? Should you even visit? Or should you stay outside? There aren’t any universal answers to these questions. The best guide for what to do is your relationship with the person.

Help Guides - Planning Ahead

A Word About Religion

Many religions include rituals that can or should be done at the end of life. These can be deeply meaningful, but should be done only with consideration for the person’s wishes. If he or she is able to communicate, ask permission before summoning a religious leader.

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People Keep Telling Me to Tell Her It’s OK to Go

People might suggest that you tell your loved one that it’s ok for them to go. You, on the other hand, may feel it is not at all ok for them to go, and that may be the last thing that you want to say. While this statement may not be helpful to you (and people are likely to say many, many unhelpful things to you during this time), you can know, at least, that they are saying it out of concern for your loved one.

Help Guides - Planning Ahead

Making Difficult Decisions

Invariably, at the end of life, terrible and difficult decisions must be made. And rarely will it seem more important that you make the right decision. In these moments, whatever your history has been with the person – however complicated your relationship has been – you want to do right by them. But it can seem overwhelming to do that. It often seems as though you have to choose between a bad option and an equally bad option.

Help Guides - Planning Ahead

Hospice Option in the United States

One option that might be presented is that of hospice. This may be a terrifying prospect for you, especially if you’re not familiar with the term. While individual programs vary slightly, generally speaking, hospice is a form of palliative care for someone whose illness is terminal (meaning that its focus is on pain control and symptom management) that is offered wherever the patient lives.

Help Guides - Planning Ahead

Bereavement

The word “bereavement” refers to a period of time during which one grieves a loss. Often, it seems like a time-limited thing, as in “bereavement leave” from work. In reality, your grief will start long before your loved one’s death, and continue on well beyond your bereavement leave. Religious traditions and social communities often have rituals and guidance about how to navigate bereavement. You may attend services, sit shiva, weep, or pray. You may light candles, fast, cut your hair, or tear your clothes. You may find comfort in friends, or you may wish to be alone. You may, again, find it helpful to talk with a counselor or do some reading about grief.

Resources

As you plan ahead, we offer you the following resources to aid you in your journey:

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.

Also available in Spanish

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.

You may also find it helpful to talk with a counselor at Chat with a Counselor.