Conversations Before A Crisis:
Planning for Hospice Care

Many people are uncomfortable having conversations about serious illness and death. As a result, they are unprepared to address the sometimes overwhelming physical, spiritual, and powerful emotional issues related to these profound life transitions. Sadly, individuals and their families are often forced to make decisions in the midst of a health crisis with little direction or information.

You may have similar fears and believe that if you don’t talk about bad things, they won’t happen to you. However, talking about dying and being better prepared allows you to enjoy life more fully and with more comfort as you approach the end of it.

Have you thought about the care you want during a severe illness or as you are dying? Have you talked with your family about plans to ensure you will get the care that you want? When you are very sick, you are likely to have some times when you cannot say what you want done. By deciding some things ahead of time, you have more control over your care.

Decisions about end-of-life care and receiving hospice services are deeply personal, based on your values and beliefs. Because it’s impossible to foresee every type of circumstance or illness, it’s essential to think in general about what is important to you. Conversations that focus on your wishes and beliefs and why you are making them will relieve loved ones and health care providers of the need to guess what you would want.

It's all about talking…talking with your loved ones about your health care preferences; talking with your doctor about your options so that you can make informed decisions; and talking with your health care agent so your wishes are honored if you can not make decisions yourself. Talking before a crisis can help you and your loved ones prepare for difficult decisions related to health care at the end of life.

Talking about dying with your loved ones

When discussing your end-of-life wishes, you should consider your:

· Overall attitude toward life, including the activities you enjoy and situations you fear;
· Attitude about independence and control, and how you feel about losing them;
· Religious or spiritual beliefs and moral convictions, and how they affect your attitude towards serious illness;
· Attitude toward health, illness, dying and death; and
· Feelings toward doctors and other caregivers.

Remember, it's up to you to take the initiative and express your wishes. Your family or loved ones are not likely to raise the issue for you. To ensure that your end-of-life wishes are honored, it’s essential to discuss your wishes with your loved ones now – before a crisis hits. The following occasions are opportunities for having conversations:

· Around significant life events, such as marriage, birth of a child, death of a loved one, retirement, birthdays, anniversaries, and college graduation;
· While you are drawing up your will or doing other estate and financial planning;
· Before and after annual medical checkups;
· During holiday gatherings, such as Thanksgiving, when family members and loved ones are present.

Sometimes sharing your personal concerns and values, spiritual beliefs, or views about what makes life worth living can be as helpful as talking about specific treatments and circumstances. For example:

· What aspects of your life give it the most meaning?
· How do your religious or spiritual beliefs affect your attitudes toward dying and death?
· How important is it to be to be physically independent and to stay in your own home?

Be sure to reassess your decisions over time. These are not simple questions and your views may change. It is important that you review these issues and discuss your choices as your personal health or circumstances change.

An important part of communicating your end-of-life wishes is discussing with your loved ones what you may need from them. Some questions that you may want to ask are:

· Will you seek out information about my disease, advance directives, your roles as caregivers, and what to expect as I get sicker and near the end of life?
· Will you respect my wants and needs, even if they’re different from what they used to be and if you don’t agree with my choices?
· If I cannot communicate for myself, will you advocate for me to make sure that what I want is done, even if you would not make the same choices yourself?
· Will you stay with me even if the going gets rough?

Talking with your doctor about your end-of-life care wishes

Do not wait until a crisis occurs before discussing concerns about end-of-life treatments with your doctor. Chances are that he or she is waiting for you to start the conversation. When you discuss your concerns and choices:

1. Let your doctor know that you are completing advance directives.
2. Ask your doctor to explain treatments and procedures that may seem confusing before you complete your directives.
3. Talk about pain management options.
4. Make sure your doctor knows the quality of life that is important to you.
5. Make sure your doctor is willing to follow your directives. The law does not force physicians to follow directives if they disagree with your wishes for moral or ethical reasons.
6. Give your doctor a copy of your completed directives. Make sure your doctor knows the name and telephone number of your appointed health care agent.
7. Assure your doctor that your family and your appointed health care agent know your wishes. You may ask your doctor specifically:
· Will you talk openly and candidly with my family and me about my illness?
· What decisions will my family and I have to make, and what kinds of recommendations will you give to help us make these decisions?
· What will you do if I have a lot of pain or other uncomfortable symptoms?
· How will you help us find excellent professionals with special training when we need them (e.g., medical, surgical and palliative care specialists, faith leader, social workers, etc.)?
· Will you let me know if treatment stops working so that my family and I can make appropriate decisions?
· Will you support me in getting hospice care?
· Will you still be available to me even when I'm sick and close to the end of my life?

By embracing the opportunity to share your feelings with your family and doctor about how you wish to be cared for – you reclaim control of one of the most important transitions of your life – the end of it and how your loved ones will remember their final days with you.

For more information on planning for end-of-life care, check out the National Hospice & Palliative Care Organization's Caring Connections LIVE website at www.caringinfo.org