Advance Care Planning

Family communication can help you focus on what is most important and what needs to be done to protect your family in the future.

Mood & Advance Care Planning

Sometimes mood can be affected by tasks left undone because they feel too stressful. We may know what needs to be done, but don’t take active steps because we feel overwhelmed by the task. Advance care planning means having a plan for future healthcare decision-making, giving voice to your wishes, so your family is under less stress in making decisions for you if needed. This is particularly important for people living with advanced cancer. Although it is stressful to discuss, it is more stressful for families to make decisions without knowing your preferences. The following video provides information on:

What is advance care planning?
Why is family communication essential?
What are advance directives?
What is a health care power of attorney?
What is a living will?
What else is important in advance care planning? – Power of Attorney, Wills, Living Trusts

Importance of Family Communication

For families to make the best possible health-care decisions, it is important to understand the goals and needs of all family members. There may be a time when your family will be called upon to make decisions for you in a health emergency. It is important that family members understand your wishes. This will decrease family member stress if you are ever unable to communicate your own wishes or needs. Below are some questions to use as a starting point in advance care planning. Please invite family members to respond to these questions as well.

These questions will help you to:

Consider what quality of life means to you and your family
Communicate with your health care team about your values and goals
Determine how you can avoid future family worry and regret

Keep in mind, that just discussing these questions will not make these events happen.

In fact, it is a good idea for all of us to have discussed these questions with our families or health care decision makers.

Knowing your thoughts and wishes will reduce stress for your family in future decision-making and will make sure your wishes are implemented.

How to use these questions:

These questions are prompts designed to raise topics for you and your family to discuss.
After you have recorded your individual responses to each question, please share your responses with each other.
These questions will be most helpful if you do not argue or disagree with your loved one’s responses. Your goal is to BETTER UNDERSTAND the other person’s thoughts, feelings and beliefs – not to change their opinions or to have the same opinions.
Try active listening – repeating back your understanding of what your loved one has said before sharing your own response.

Family Communication Questions

1. In your life, what brings you joy? Please try to name all people, places, things, activities or experiences that come to mind. You can view the Mood-Boosting activities list for ideas.

2. What is most important to you? What do you value most in life? This is often reflected in how you spend your time...or how you would like to spend your time. Refer to your values that you defined in the Values and Worries at the start of the FOCUS program.

3. Quality of life is defined as overall well-being. This includes the impact of disease or aging on the body, mind, relationships, and daily function. Quality of life also includes the ability to manage symptoms, maintain autonomy, and engage in meaningful activities, despite the challenges posed by cancer. Which of these domains are most important to you?

Physical Functioning (e.g., walking, dressing, bathing)
Emotional Well-Being (e.g., ability to manage stress, anxiety, depression)
Pain and Symptom Management (e.g., fatigue, nausea, discomfort)
Ability to Think Clearly (e.g., concentration, memory)
Social Relationships and Support (e.g., family, friends, pets, community)
Role Functioning (e.g., work, clubs, household, communication)
Spiritual Well-Being (e.g., meaning, purpose, faith, connection with Higher Power)
Financial Well-Being (e.g., cost of treatment, lost income, insurance coverage)
Sleep and Rest (e.g., quality and quality of sleep, recreation, recovery)
Independence and Autonomy (e.g., ability to make decisions, mobility, make choices)

4. Are there other areas that were not listed that are important to you?

5. How have your priorities shifted since your cancer diagnosis?

6. What are the three four most important areas for you? Have you spoken with your oncologist about this?

7. Taking into consideration your responses about quality of your life, how would these things influence your decisions? For example, if any of these areas of your life worsened, how might this influence your care choices? Would changes in any of these areas impact your desire to continue treatment? How so?

8. Are your current wishes or preferences influenced by your religious or spiritual beliefs? Spiritual beliefs include those beliefs about nature, the world, the sacred, connection and interconnection, in addition to specific religious beliefs.

9. You are an essential part of your family. You have many unique and important roles or functions you fill as a family member. This might include driver, chef, laundry person, mediator of family battles, support provider to distressed family members, or even communication hub for the family. What do your loved ones need to know about how to carry on these roles in your absence?

10. Are there things you would like to communicate by letter, video, diary or other means to leave a record of your legacy for future generations? What are your hopes and dreams for your family? Are there things they should know to get through difficult times? What do you most appreciate about each family member? What are your biggest worries about each family member if you are not physically able to help?

11. Do you have a current Will or Living Trust? If you have a will or trust that you completed with a computer program—have you had this reviewed for accuracy? If you have not established a Will or Trust, why? Would talking to a hospital social worker be helpful so you know where to get free legal advice? By what date will you do this?

12. Do you feel that your symptoms (nausea, constipation, pain, sleep difficulties) have been well managed? If not, which symptoms are most bothersome? For loved ones, are you experiencing any health problems that should be checked out? When do you plan to talk to your health care providers about these problems?

13. What is most stressful for you at this time? What are some things you can do to cope with these difficulties?

14. Are there things you want to discuss with your loved one, but have held back to try “to protect” them?

15. How is your family coping emotionally? Could anyone benefit from additional support or professional assistance?

16. Who would you choose as your health care power of attorney(s)? Why have you selected this person or persons? Have you talked with them about your future wishes?

17. If you were ever unable to make decisions for yourself, how would you want your HPOA to make these decisions?

Cardiopulmonary Resuscitation (CPR)

Right now, do you think you would want cardiopulmonary resuscitation (CPR) if your heart stopped or you stopped breathing? Why or why not? Are there situations in which you would not want CPR? For example, 1) if you had less than 6 months to live, 2) if you were fully dependent on others for bathing, dressing, feeding, 3) if you couldn’t communicate, or 4) if you were unable to think clearly and didn’t know your name, where you were, or recognize people? Would this change your desires for CPR?

CPR is an attempt to restart the heartbeat of a person who has no heartbeat or who has stopped breathing. Forceful pressure on the chest may be used as well as electric shock (defibrillation) to restart the heart.

A DNR (Do Not Resuscitate) order is a doctor’s order that tells the medical team that you do not want resuscitation if your heart stops beating.

For many people, the only experience we might have with CPR is a CPR training course or watching CPR efforts on television. These experiences may provide an overly optimistic picture of the actual success rates of CPR for chronically ill individuals. Only about 60% of patients survive CPR in a hospital setting. Of all patients who receive CPR in the hospital, about 30% survive to leave the hospital.

The rate of survival is much lower in those with serious or advanced disease - less than 5%. Most discharged after CPR require rehabilitation and/or long-term care. They may no longer be able to receive other cancer- related treatments after this related to their poorer functional or health status.

Mechanical Ventilation

Right now, would you want mechanical ventilation if you could not breath on your own? Why or why not? For how long? Are there situations in which you would not want mechanical ventilation?

Mechanical ventilation is used when people cannot breathe on their own. A plastic tube is put down the person’s throat and a machine forces air in and out of the person’s lungs through the plastic tube. Those requiring “prolonged mechanical ventilation” (PMV) for more than 21 days often experience muscle wasting and weakness, recurrent infections, emotional difficulties, distress related to communication challenges, periods of confusion, and/or pain. One year death rates after prolonged mechanical ventilation range from 58% to 68%. Elderly persons, those with chronic illness, those with poor functioning prior to PMV or those with multiple failing organs (kidney, heart, liver, and brain) have a poorer chance of survival.

Only 17% of those who survive PMV are discharged home directly from the hospital. The rest typically require additional care in another medical setting such as a long-term acute care hospital, a rehabilitation hospital, or a skilled nursing facility. About half are able to eventually not need mechanical ventilation with about 12% returning home with good functioning. Those discharged home often experience poorer physical and mental functioning, decreased energy, and sleep difficulties and up to 50% may require re- hospitalization in the coming year.

Artificial Nutrition and Hydration

Right now, would you want artificial nutrition and hydration (ANH) if you were unable to eat or drink by mouth? Why or why not? For how long? Are there situations in which you would not want ANH?

Artificial nutrition and hydration includes IV (intravenous) fluids and tube feeding. Intravenous (IV) fluids are given through a catheter (thin, flexible tube) inserted into a vein. Tube feeding is when a person receives fluids and liquid nutrients through a tube into the stomach. A nasogastric “NG” tube goes through the person’s nose and esophagus into the stomach and can be used for a short time. A gastrostomy or G- tube is inserted directly through the skin into the stomach and can be used for long-term tube-feeding.

Benefits and risks: IV fluids are frequently used in the hospital to keep patients hydrated if they are having trouble eating and drinking. Tube feeding (TF) can and does benefit many who have trouble swallowing, but are healthy otherwise. However, if a person is very sick with advanced cancer, TF does not improve recovery and may cause problems including nausea, vomiting and swelling. In the worst case scenario, TF may contribute to shortness of breath. TF will not make you feel better. It could make you feel worse and will not increase survival.

What you should know. Offering food and drink is associated with love and caring—and is included in most social events and celebrations. However, as cancer advances, fewer calories may be needed. Appetite may naturally decrease. With advanced disease, patients should not be made to feel guilty because of “not trying to eat and drink.” It is NOT a matter of not wanting to eat or drink, but not being hungry or thirsty. It is really normal in the setting of severe advanced illness to not be hungry or thirsty. There comes a point where our bodies can't make use of the food or fluids we put in, so our bodies make signals that make us not feel hungry or thirsty. In situations of severe appetite loss, small meals and sips of fluids or ice chips may be helpful depending on your doctor's guidance.

Other Information

Another task/decision your family will be faced with in the future (hopefully very distant) is planning your funeral/burial/cremation or other end of life celebration. Do you have any preferences for how your loved ones should plan for these events? Do you have any spiritual or religious practices that you would like them to include? Would you prefer burial or cremation? Where and how would you like to be laid to rest?

Where can I find a copy of my state’s Living Will?

You can ask the social work department of most hospitals for copies of these forms.

Each state’s advance directive documents (including Ohio’s Health Care Power of Attorney and Living Will) can be found below:

Advanced Care Planning Checklist

You can use this checklist to guide you through advance care planning.

Ohio’s HCPOA and Living Will