Here you are 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 health care 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.

Advance Directives & Health Care Proxies.

Who Should I Appoint as a Health Care Proxy?

The Importance of Communicating about your Health care Proxy.

Dealing with Conflict When Things Aren’t Going Well.

Here are resources on planning for death and dying:

Death, Dying & Bereavement.

I’m Not Grieving, I’m Furious!

Laughing.

What to Do at the Bedside.

A Word About Religion.

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

Making Difficult Decisions.

Hospice Option in the United States.

It’s Important to Know about Palliative Care

Bereavement.

Advance Directives & Health Care Proxies

If you or a loved one has 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. Health care proxy regulations vary by state. 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 health care 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 health care 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 confident.

 

The Importance of Communicating about your Healthcare Proxy

So you’ve written your wishes in your living will, and you’ve appointed a health care 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 health care 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. It is important that everyone be on the same page, as much as possible, and that includes your physicians as well.

 

Dealing with Conflict When Things Aren’t Going Well

With decisions, there’s often conflict: conflict among family members, perhaps, or conflict among medical opinions. Or, maybe there’s 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.

  • 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.
  • 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.
  • This is one of the times that a chaplain or another trusted mediator is essential. Chaplains are trained in both health care and spiritual/religious 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 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.
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.

 

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 many different kinds of feelings in you, all of which are tangled up with themselves and might even not make any sense. What follows is by no means exhaustive.

 

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. You have every right to be angry that a person you love is facing illness and the end of their life. You might be angry at God, at the universe, at everyone with healthy family members, even at the person for leaving you. None of this makes you a monster, and all of it is normal. You might find it helpful to talk to another family member about this feeling (probably they’re experiencing it too, but may be afraid to voice it). Or you may feel more comfortable speaking to a chaplain. Chaplains can help you strategize for what to do with your anger so that it doesn’t consume you.

 

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. It feels like sacrilege to be laughing at such a sad time, but it’s completely normal. Life is complicated; loss is complicated. We are often happy and sad at the same time. You might even feel relieved at someone’s death – happy that their suffering is coming to an end – even while you’re sad and outraged.

 

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. If you usually greeted your grandmother with a hug and a kiss on the cheek, do that, if you’re able. If your sister loved classical music more than anything in the world, consider playing some music for her. If your family tended to be quiet, don’t pressure yourselves to fill the silence with empty chatter. If your family tends to talk and laugh jovially, don’t feel the need to stifle yourselves. If you’re in a hospital or hospice, ask the medical staff how to look for signs of discomfort in your loved one so that you can notice whether the noise or touch is causing them pain.

 

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. If the person has written advance directives, consult them to see what they’ve stated about rituals they would like performed. If you are of a different religion from the person, please only perform your religious rituals if you are absolutely certain that the person would find this touching and meaningful. Religious rites should never be forced upon a person at the end of life. If you are feeling conflicted about how to navigate this dilemma, please consult a chaplain. Chaplains are trained in interfaith ministry, and can be outstanding resources to you during this time.

 

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. While you may not feel comfortable telling your loved one that it’s “ok” for them to go, you may find it helpful to tell them that they will not be forgotten. You might want to tell them about the legacy they will leave: lessons they’ve taught you, ways their influence will remain in the family, things that you will tell your children, and memories you will never forget. You might thank the person for their role in your life. Or you may not feel comfortable doing any of these things. Again, let your history and relationship with the person be your guide.

 

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. 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. It may seem as though a terrible weight of responsibility has been foisted upon you. Now, more than ever, is a time to seek counsel. Consider what you know of the person. If they have advance directives, read them. Take some time to think about who this person was in life. What was important to them, what core values they held. If the person was religious, even if you do not share their religion, consult a religious leader (preferably one who knew they person well) for their counsel. For yourself, you might find it helpful to talk all this through with a Chaplain. Chaplains are well-versed in both religious traditions and the medical world, and can help you sort through your options. They can also help you formulate questions to get more information from your health care team.

 

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. In many cases, it is a way for a dying person to go home to a familiar and comfortable environment, rather than having to remain in the hospital. Many, many people desire to die peacefully at home, but not everyone. You should again weigh everything you know about the person, seek counsel from religious leaders or others who know the person well, and talk the options through. Often, hospice is a huge relief: getting you out of the chaos of the hospital environment, to a place where you can sit in comfort, be surrounded by your pets, your friends, your photographs – whatever comforts you most.

 

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 two days’ 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 chaplain or another trusted counselor or do some reading about grief on this site.