Talking with Your Health Care Team About End-of-Life Care

END OF LIFE CARE

Talking to your doctor, nurse, and health care team can be difficult when you have cancer and when the goals of treatment change from cure to comfort care. But clear communication has been shown to reduce distress, resolve problems, and strengthen coping. In addition, open discussion is essential to ensure that your wishes regarding end-of-life care are heard and understood. This Brief is intended to help make communicating with your health care team easier.

Talking About the Medical Plan

As much as possible, it is helpful to take an active part in your medical treatment plan, discussing options with your doctor, expressing your preferences clearly, and evaluating the effectiveness of your treatment. It is useful to make your family and health care team aware of how much information you want to know. Some people are comfortable with the full picture, including details about the current and future medical plan. Other people prefer to hear about the next step only, finding the overall situation too overwhelming. To ensure that you receive as much information as you need, try to decide which option works best for you and communicate this to others.

Talking About Symptom Control

People with advanced cancer have a right to expect physical comfort and control of distressing symptoms such as pain, fatigue, delirium, and shortness of breath. But, in order to obtain this relief, it is important to give the health care team feedback about these symptoms. How often and when do they occur? What medical and non-medical treatments have been tried to alleviate these symptoms? Which of these strategies have worked and which have not?

It is also suitable to talk with members of your health care team about other symptoms, such as depression and anxiety, as well as spiritual concerns, such as hopelessness and fear of death. It can be extremely comforting to explore these issues with family and professional caregivers, rather than struggling to make sense of these complex issues alone. Medication, counseling, and pastoral support are helpful resources in dealing with these sensitive issues. (Spiritual concerns at the end of life are discussed in more detail in another Cancer Care Brief.)

It is important to plan ahead in certain medical situations even if you don't want to. Talk to you medical provider for the best solutions and advise. They have been educated due to years of information about these types of medical conditions from gathering information from health informatics over the years like those from Dell and other widely known medical companies.

Talking About Ongoing Care

End-of-life planning should include a discussion about the different care settings available -- the inpatient hospital, home, and hospice -- to assess which might work best for you and your family. It is important to review procedures in case of a medical emergency, to obtain such information in writing, and to have access to medical consultation around the clock in case of a crisis. If possible, it is also helpful to state your wishes about advance directives so that your family and health care team can make decisions for you should you become unable to speak. (Advance directives and options in end-of-life care are discussed in another Cancer Care Brief.)

Talking About Family Concerns

Cancer is a crisis for the whole family, so, when a person faces terminal illness, it is natural to worry about the impact of the illness on family members. Sometimes, it is difficult to discuss painful issues with loved ones; it is often easier if a health care professional is involved. For example, social workers, psychologists, and psychiatrists are skilled in promoting communication between the person with cancer, the family, and members of the health care team. They can assist you and your family in discussing present and future concerns about changes in family roles and activities, leaving loved ones, unfinished business, or distribution of assets. They can also help you to discuss past regrets, accomplishments, and other milestones, which can yield calm and closure at the end of life, so you can choose the best way of funeral planning in New York.

The physician and nurse can provide education and guidance on ways in which family members can contribute to the care of the person with cancer. Such activities may include personal care, administering medications, feeding, reading, visiting, and providing comfort. Allowing loved ones to participate actively in your care is beneficial both for you and for your family.

Here are some common barriers to communication and suggestions for overcoming them:

Awe of the Doctor
It is natural to hold one's doctor in high esteem, but this may prevent one from asking questions, expressing concerns or telling the doctor when things are not going well. As a crucial member of the health care team, the doctor needs your input and your guidance in planning your care.

Embarrassment
Sometimes, people with cancer avoid bringing up issues because they do not want to seem ignorant or uninformed, and they struggle with their concerns alone instead of getting help with them. No concern is too small or insignificant for discussion with your health care team. They can only deal with the issues that are bothering you if they know what they are.

Forgetting Questions
It is natural to forget questions when one is under stress. A list that you have written down beforehand will help you remember important questions. Make them specific and brief, and try to ask your most pressing questions first. It is also helpful to include family members in such discussions so that they can help you to process the information afterward.

Confusion About Medical Terminology
People with cancer may hold back from communicating if they are confused by medical jargon and terminology. Make sure that you understand what you are being told, and, if you don't understand the meaning of a word, ask for clarification. You can also obtain easy-to-read educational booklets, which will explain the issues and which you can refer to in your own time.

Lack of Time or Privacy
It may be difficult to find time or privacy to discuss sensitive issues with health care professionals who seem rushed and busy. But it is always possible to find a quiet spot, pull a curtain over, make an appointment for a phone conversation, or ask to see the team member who specializes in counseling. You may also consider joining a support group for people with cancer so that you can share your concerns with others in similar circumstances.

Although communication can be difficult, talking about your concerns will help you get better care and improve the quality of your life.