Our priorities, hopes, fears, and spiritual beliefs all influence the life choices we make, and facing the end of life is no exception. The more you know about what’s important to your loved one, the more effective you can be in helping her plan for the future. This kind of knowledge can also help you make more informed decisions on your loved one’s behalf should she become incapacitated.
Even if you and your loved one have planned for all kinds of scenarios, life can be unpredictable. Knowing your loved one’s core values can help guide your way when the unexpected happens.
While some of the following worksheets may mention specific medical or care choices, the emphasis here is mostly on clarifying underlying values and feelings about quality of life. You can use the rest of the toolkit to explore your loved one’s specific preferences and concerns about healthcare, funeral and financial arrangements, care settings, and more.
Keep in mind that this kind of conversation about values is important for all of us to have with the people who are closest to us. So consider answering these questions along with your loved one, and writing down both your answers as you work through the list together.
Rating What’s Important
Ask your loved one how important the following items are on a scale from 1 to 5, where 1 is
Not Important, and 5 is
Very Important.
- Letting nature take its course.
- Preserving my age-appropriate quality of life.
- Staying true to my spiritual beliefs and traditions.
- Living as long as possible, regardless of age-appropriate quality of life.
- Being independent.
- Being comfortable and as pain-free as possible.
- Leaving good memories for family and friends.
- Feeling a sense of completion.
- Making a contribution to medical research/teaching.
- Talking to a spiritual advisor.
- Being able to relate to family and friends.
- Being free of physical limitations.
- Being at home, rather than in a nursing home.
- Not being a burden to my family.
- Being mentally alert and competent.
- Being able to leave money to family, friends, and charity.
- Dying in a short while rather than lingering.
- Avoiding expensive care.
- Preventing arguments by making sure everyone knows what I want.
- Having my wishes respected even if others disagree.
- Having a doctor who knows me as a whole person.
- Other ______________________________
Personal Values and Spiritual Beliefs
The following questions may help you better understand your loved one’s values.
- How do you feel about your chances of getting better? Do you want to continue to explore options for curative treatment even after a terminal diagnosis? Or would you prefer to let life takes its course and receive comfort treatments only?
- How do you feel about life-sustaining treatments in the case of a terminal illness? Permanent coma? Irreversible chronic illness or disease (e.g., Parkinson’s or Alzheimer’s)?
- Is it important for you to know what may happen in the course of your illness? Or would you rather not know in advance, and just deal with things as they come up?
- How should your spiritual or religious beliefs be taken into account for both medical care and life choices?
- For difficult healthcare decisions, who would you want consulted to make decisions, either with you or on your behalf? Rate the following from most to least important.
- Doctors and medical staff
- Hospice staff
- Family member or friend ________________ (Have you made this person your durable power of attorney for health care?)
- Pastor, priest, rabbi, or other spiritual advisor
- Other _________________________
- Do you believe in alternative forms of treatment, such as healing through prayer, acupuncture, or herbal remedies? What are the treatments you want included in your care?
- Are you uncomfortable with strangers doing intimate care tasks for you (e.g., bathing)? If so, is there any time that getting care from strangers would be OK; for example, when a family member or friend is unavailable, or while you’re in the hospital?
- Are you uncomfortable with family members doing intimate care tasks for you? If so, is there any time that getting care from family members would be OK; for example, when you can’t afford to hire a professional caregiver, or when your professional caregiver is unavailable? Which family member(s) would you prefer in this role? Who would you not want under any circumstances?
- How do you feel about using medication to control pain? Do you want your pain controlled even if the pain medications might cause unconsciousness or hasten death?
- Do you not wish to receive a blood transfusion or any blood products, such as plasma or red blood cells?
- How do you feel about having hospice involved in your care?
- Is it important to you to stay at home as long as possible? Would it ever be OK to be moved to a hospital or nursing home; for example, if home care is an extreme burden, or if your condition needs medical supervision?
- How do you feel about the financial burden of your healthcare? How do financial considerations work with or contradict your other beliefs (i.e., about keeping you alive indefinitely and by any means)? Is it all right for your family to consider the financial burden when making healthcare decisions on your behalf?
- What do you most value about your mental and physical well-being? For example, do you love to be outdoors? To be able to read or listen to music? To be able to talk to loved ones? Seeing, tasting, touching?
- Do you have any other spiritual beliefs or personal values that are important to share at this time?
Finding Closure
When faced with mortality, many people feel a natural urge to “get their affairs in order.” This may involve preparing a will, making funeral plans, etc., but there is often an emotional component, too. Some people want to make amends or heal relationships before they die. And many want to say goodbye—to family and friends, and to the life they are leaving behind. Often these wishes can be hard to express. You can help your loved one work toward closure by asking the following questions.
- Is there any unfinished business with family or friends that you need to take care of?
- Do you need to say or do anything to find closure with someone (such as write a letter or make a tape)? Is there some way I can help you with that?
- Is there a difficult relationship you would like to heal or come to terms with? Would you like help with this, perhaps from a family member or friend, a counselor or spiritual advisor?
- Is there something you want to see or experience before you go?
- Do you need to make peace with God? How do you think you can do this? Would you like to have the help of a spiritual advisor?
- Is there anything you need to do, say, or have happen, to feel that your life is complete?
- Who do you want nearby at the end?
- Is there anyone you don’t wish to have nearby, even if they ask?
- Who do you want notified when you die?
End-of-Life Wishes and Values
Exercise 1. Find out how your loved envisions the end of life by having him or her answer the following questions.
- If you could plan it today, what would the last day or week of your life be like?
- Where would you be? What’s the environment like?
- Who would be present?
- What would you be doing?
- What would you eat or drink if you could?
- What would be your final words or last acts?
- Other ______________________
- Do you want to have any rituals or ceremonies performed?
- What are your biggest fears about the end of your life?
- What are your biggest hopes about the end of your life?
Exercise 2. Find out what’s important to your loved one in the last days by having him or her rate each of the following on a scale from 1 to 5, where 1 is Not Important, and 5 is Very Important.
- Avoid pain and suffering, even if it means that I might not live as long.
- Be free from pain, even if medication makes me unconscious or less alert.
- Be alert, even if it means I might be in more pain.
- Be at home.
- Be under medical care at the hospital or nursing home.
- Be under hospice care wherever I am.
- Be able to feel someone touching me.
- Have loved ones at my side.
- Have religious or spiritual advisors at my side.
- Be able to tell my life story and reminisce.
- Reconcile differences and say “good-bye” to my family and friends.
- Be kept alive long enough for my family to get to my bedside to see me before I die, even if I'm unconscious.
- Have my financial affairs in order.
- Have my funeral arrangements made.
- Be able to talk about what death means and what’s going to happen to me.
- Other ______________________________