We know effective patient-caregiver communication is associated with enhanced patient satisfaction, increased adherence to recommended treatment plans and improved health outcomes. We encourage individuals and family members to communicate with their caregivers and to become active participants early on in their medical care. Learn how to become more involved in your own care and to access links to other resources that can be helpful.

How You Can be an Active Participant in Compassionate Care
Every patient has the right to compassionate care. Compassionate caregivers are sensitive and empathic, demonstrating the following qualities:

• Respect for you and your family
• Ability to understand your needs
• Strong communication, listening and interpersonal skills
• Ability to impart strength and hope
• Ability to think and act creatively

You (or a family member) will improve your relationship with your caregiver if you:

• View your relationship with caregivers as a partnership in which you are an active participant. The responsibility for good communication falls both on you and your caregiver.

Your role is to:

• Come to the visits prepared not only with your questions but also willing to share your concerns. Remember that your caregiver cannot read your mind so be sure to express all your thoughts and worries.
• Tell your caregiver everything you know about your health, medical history, and what you think may have caused your problem.
• Take part in your health care decisions. Address your concerns, both clinical and non-clinical (i.e., quality of life, work life, etc.) up front with as much detail as possible. Let the caregiver know what is important to you.
• Bring a friend or family member with you for support or if you are worried your caregiver will not understand you.
• Ask for a qualified language interpreter if you need one.
• Make sure the caregiver is talking in words you can understand and ask for an explanation of any medical terms you do not understand.
• Tell your caregiver about all the health care professionals you are seeing, including alternative ones (e.g., chiropractors and acupuncturists) or any remedies traditional to your culture that you are taking.
• Show caregivers you are interested in them. Ask a question about how they are doing.
• Take notes and feel free to ask for written information. Repeat any suggested treatment plan and feel free to ask the caregiver to write down his/her suggestions.
• Ask what you can expect regarding the treatment process (e.g., side effects) and the healing process.

The more open you are and the more you understand and participate in your own care, the more likely your caregiver will provide compassionate care. If you feel you are not getting the compassionate care you deserve, talk to your caregiver. If the situation does not improve, look for another caregiver.

Click here for a pdf version of the above material How You Can be an Active Participant in Compassionate Care, written by the Schwartz Center

"What Makes for a Compassionate Patient-Caregiver Relationship?"
The Joint Commission published the Schwartz Center's findings. Click here for more information.

For additional support we have researched and accumulated useful resources and listed them below:

Click on the links below to view and print fact sheets on ways to prepare for a medical visit: Information provided in collaboration with the Partnership for Healthcare Excellence

• Choosing a Doctor
• Prepare for Dr. Appointment
• Prepare for Surgery
• Medication Safety

The Center for Communication in Medicine
The Center for Communication in Medicine produces programs which highlight the roles and responsibilities of patients, families, and medical practitioners in improving communication. By opening the conversation through community-based programs and maintaining collaborative ties to medical educators and clinicians, the Center seeks to increase awareness of the key role of communication in making informed healthcare decisions and improving quality of care.

The Cochrane Collaboration
The Cochrane Collaboration is an organization dedicated to making up-to-date, accurate information about the effects of medical treatments readily available worldwide. It produces and disseminates systematic reviews of healthcare interventions and promotes the search for evidence in the form of clinical trials and other studies of interventions. The major product of the Collaboration is the Cochrane Database of Systematic Reviews which is medically sophisticated information.

Foundation for Informed Decision Making
The Foundation for Informed Decision Making (FIMDM) is an organization committed to strengthening the role patients play in selecting treatments for their medical conditions. FIMDM has a large selection of cancer diagnosis information videos and booklets - see Choosing Your Treatments.

Institute for Family-Centered Care
The Institute for Family-Centered Care provides leadership to advance the understanding and practice of patient- and family-centered care in hospitals and other health care settings. The Institute serves as a central resource for both family members and members of the health care field. The website highlights the value of patient and family resource centers and provides a list of hospital based resource centers.

Massachusetts Medical Society
The Massachusetts Medical Society serves as a powerful force in patient advocacy, public health education and the dissemination of medical information. The website provides a wide variety of resources to patients and family members.

MedlinePlus
MedlinePlus is a website that addresses many health related questions. MedlinePlus brings together authoritative information from the National Library of Medicine (NLM), the National Institutes of Health (NIH), and other government agencies and health-related organizations. MedlinePlus also has extensive information about drugs, an illustrated medical encyclopedia, interactive patient tutorials, and recent health news.

Partnership for Clear Health Communication
The Partnership for Clear Health Communication's website offers materials that empower patients to come to medical visits prepared with questions. They have established an "Ask Me 3" Campaign that provides useful tools for medical visits. http://www.askme3.org/for_patients.asp

Partnership for Healthcare Excellence
The Massachusetts-based Partnership for Healthcare Excellence is the first statewide effort in the nation to focus specifically on patients - helping them play a greater role in improving the quality of their health care. The goals of the Partnership are to educate the public about variation in healthcare quality and to provide consumers with information and tools to improve the quality of their own care.

Relevant Articles: Being Prepared as a Patient/Advocacy/Empowerment

Annas G. A national bill of patient rights. NEJM. 1998;338(10):695-9.

Gibbs N, Bower A. What insiders know about our health-care system that the rest of us need to learn. Q: What scares doctors? A: Being the patient. Time Magazine. 2006 May 1

Gorney C. Ask for what you want 100 percent of the time: How to ensure that you get A-plus medical care. The Oprah Magazine. 2003 Jan 1.

Haig S. What makes a good patient? Time magazine. 2006 Apr 23.

Haug M, Lavin B. Consumerism in medicine: Challenging physician authority. Beverly Hills: Sage Publications; 1983.

Lewis D, Cooper J, Gunawardena S. Caring Connection: internet resources for family caregivers of children with cancer. AMIA Annu Symp Proc. 2006:1007.

Poon E, Wald J, Schnipper J, et al. Empowering patients to improve the quality of their care: design and implementation of a shared health maintenance module in a US integrated healthcare delivery network. Med Info. 2007;12(pt2):1002-6.

Roizen M, Oz M, The Joint Commission. You the Smart Patient: An Insider's Handbook for Getting the Best Treatment. New York: The Free Press; 2006.

Newman D. Talking with doctors. New Jersey: The Analytic Press; 2006.

Relevant Articles: Communication with Professional Caregivers/Patient-Caregiver Relationship (click here for list)

Blue L. Better bedside manners. Time magazine. 2007 Sep 5.

Cichowski J, Boodman SG. Divorcing your doctor: when communication breaks down, it may be time for someone new. Washington Post. 2000 Apr 25.

Kolata, G. Being a patient series - difficult doctors: When the doctor is in, but you wish he wasn't. The New York Times. 2005 Nov 30.

Kowalczyk L. Unhappy endings: When proactive patients and harried physicians clash, breaking up is hard to do. The Boston Globe. 2007 Oct 8, C1.

Landro L. Doctors and patients air grievances. The Wall Street Journal, 2004 Feb 26.

Levine M. Tell the doctor all your problems, but keep it to less than a minute. The New York Times. 2004. June 1.

Miller M. We all need a dose of the doctor: The healing relationship between patient and physician plays a vital role in medical care. Newsweek. 2004 Sept 27.

Newman D. Talking with doctors. New Jersey: The Analytic Press; 2006.

Ralston JD, Carrell D, Reid R et al. Patient web services integrated with a shared medical record: patient use and satisfaction. J Am Med Inform Assoc. 2007;14(6):798-806.

Redfearn S. No, you're the jerk doc - patient summit probes sources of mutual disdain. The Washington Post, 2004 Mar 9.

Salgo P. The doctor will see you for exactly seven minutes. New York Times. 2006 Mar 22.

Tang PC, Lansky D. The missing link: bridging the patient-provider health information gap. Health Aff (Millwood). 2005;24(5):1290-5.

Tokarski C. Patients more worried about clinician relationship, access to care than technical errors. Medscape Medical News, August 16, 2004.

Tugwell P, Santesso N, O'Connor A, Wilson A, Effective Consumer Investigative Group. Knowledge translation for effective consumers. Phys Ther. 2007;87(12):1728-38. Review.