Patient and Family Resources

We know that effective communication between patients and caregivers improves patient satisfaction, increases adherence to recommended treatments, and leads to better health outcomes.  As a result, we encourage patients to communicate openly with their caregivers and become active participants in their medical care.  At the same time, however, we know that some patients prefer to leave healthcare decisions to their doctor or other healthcare professional.  Each person should feel free to choose the approach that works best for him or her. You can significantly improve your relationship with your caregiver if you view the relationship as a partnership in which you and your family members are active participants. The responsibility for good communication falls on both patients and family members and caregivers. Caregivers also value being recognized by their patients and families for the compassionate care they provide.  You can help promote compassionate care by expressing appreciation for the compassionate care you receive and speaking up when you do not receive it.

As a patient, your role is to:

  • Come to medical appointments prepared not only with your questions but also with a willingness to share your concerns. Remember that caregivers cannot read your mind, so be sure to clearly express your thoughts and concerns.
  • Tell your caregiver everything you know about your health, medical history, and what you think may have caused your health problem.
  • Take part in making healthcare decisions.  Express your concerns, both medical and non-medical (for example, the impact of your illness on your quality of life, work life, family life) with as much detail as possible. Let your caregiver know what is important to you.
  • Bring a friend or family member with you to your medical appointments for support or if you’re worried that your caregiver won’t understand you.
  • Ask for a qualified language interpreter if you need one.
  • Make sure your caregiver is using words that you can understand and ask for an explanation of any medical terms that are confusing to you.
  • Tell your caregiver about all the healthcare professionals you are seeing, including non-traditional practitioners such as chiropractors and acupuncturists; let your caregiver know about any remedies traditional to your culture that you are taking.
  • Show your caregivers that you are interested in them. Ask them how they are doing.
  • Take notes and feel free to ask for written information. Ask your caregiver to repeat any treatment recommendations if you do not understand them. Feel free to ask your caregiver to write down his or her recommendations.
  • Ask whether there are any side effects from the drugs or treatments you have been prescribed and how soon you might begin feeling better.

The more open you are and the more you understand and participate in your own healthcare, the more likely it is that you will have a good relationship with your caregiver.

Resources

To help ensure that you receive compassionate care, the Schwartz Center has provided the following information, including links to online resources and organizations that can support and assist you. These resources are intended to be helpful, but are not meant to be an exhaustive list of all resources.

Center for Communication in Medicine The Center for Communication in Medicine develops programs that highlight the roles and responsibilities of patients, families, and medical practitioners in improving communication. By starting 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 the quality of care.

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 through clinical trials and other studies.

Foundation for Informed Decision Making The Foundation for Informed Decision Making works to strengthen the role patients play in selecting treatments for their medical conditions. The Foundation has a large selection of what are called “decision aids” (videos, brochures, online materials) that help patients facing many different health problems choose the right treatment for them.

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

Journal of Participatory Medicine This peer-reviewed journal is published by the Society for Participatory Medicine, which encourages patients to be full partners in their healthcare and to be seen as such by healthcare professionals. Articles are about ways to improve the practice of medicine and the delivery of care by building stronger relationships between patients and caregivers.

MedlinePlus MedlinePlus is a website that addresses many health-related questions, bringing together authoritative information from the National Library of Medicine, 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 provides materials that help patients come to medical visits better prepared. Their Ask Me 3 campaign provides useful tools for medical visits. 

Partnership for Healthcare Excellence The Partnership for Healthcare Excellence is a nonprofit organization dedicated to helping consumers improve the quality of their healthcare.  The organization has produced a number of helpful fact sheets, including fact sheets on choosing a doctor, preparing for your doctor’s appointment, and preparing for your hospital stay.

When you’re taking care of a family member, you need to be able to communicate well with your loved one’s entire medical team. We know that balancing your loved one's daily needs with your own can be a challenge.  Below are some resources that can help.

Resources

To help ensure that you receive compassionate care, the Schwartz Center has provided the following information, including links to online resources and organizations that can support and assist you. These resources are intended to be helpful, but are not meant to be an exhaustive list of all resources.

AARP Formerly called the American Association for Retired Persons, AARP has an extensive section on its website devoted to family caregiving, grief and loss, and end of life care.

CarePages The CarePages website allows patients and families to create their own web pages to encourage greater communication during times of illness.

Caregiver Action Network Caregiver Action Network (CAN) is the nation’s leading family caregiver organization working to improve the quality of life for the more than 90 million Americans who care for loved ones with chronic conditions, disabilities, disease, or the frailties of old age. CAN is a non-profit organization providing education, peer support, and resources to family caregivers across the country free of charge.

Share the Care Share the Care is an organization that promotes group caregiving so that the burden does not fall on the shoulders of one or two individuals. It was inspired by the experience of the founder who gathered a group of friends to help another friend cope with cancer.

Family Caregiver Alliance The Family Caregiver Alliance is a nonprofit organization that offers a wealth of information for families and friends caring for adults with chronic, disabling illnesses. Newsletters, fact sheets (many in Spanish and Chinese), online support groups, audio workshops, resource lists, policy updates, caregiver advice, and more are available free of charge on their website.

Next Step in Care

Next Step in Care is a website that provides practical advice and easy-to-use guides for both family caregivers and providers, helping them address patient needs as patients move among hospitals, rehabilitation facilities, nursing homes, and home. The website was created by the United Hospital Fund to promote safer and smoother transitions for patients.

When you or a family member is diagnosed with cancer, there is a whole new world of information to explore and understand. The organizations below provide helpful tips on gathering clinical information, making informed decisions, and finding supportive services. Informed decision-making improves the level of communication between patients and their caregivers.

Resources

To help ensure that you receive compassionate care, the Schwartz Center has provided the following information, including links to online resources and organizations that can support and assist you. These resources are intended to be helpful, but are not meant to be an exhaustive list of all resources.

American Cancer Society The American Cancer Society (ACS) is a nationwide community-based voluntary health organization committed to eliminating cancer as a major health problem. The organization works to prevent cancer, save lives, and diminish suffering from cancer through research, advocacy, education, and service.

American Cancer Society Cancer Survivors Network The ACS Cancer Survivors Network is a private and secure website that enables cancer survivors to communicate with others who have shared interests and experiences. Members receive access to multiple supportive services, including joining existing and creating their own online support communities; designing personal web pages to share experiences, inspirations, and thoughts; and receiving a monthly e-newsletter.

CancerCare CancerCare is a national, nonprofit organization dedicated to providing free support services to anyone affected by cancer.  Services include counseling, education, and financial assistance. Individual and group counseling is available face-to-face, over the phone, and online.

Candlelighters for Children with Cancer Candlelighters is a nonprofit organization that provides support to families of children (up to age 21) who have been diagnosed with cancer. The organization also sponsors educational programs and advocates on behalf of those affected by childhood cancers.

The LIVESTRONG Foundation The LIVESTRONG Foundation is a nonprofit organization committed to empowering, inspiring, and providing practical information and tools to people affected by cancer. The organization’s goals are to prevent cancer, improve access to screening and care, improve the quality of life for cancer survivors, and increase the investment in cancer research.

The Mesothelioma Group The Mesothelioma Group is a small team of healthcare professionals, patient advocates and communication specialists who work to support patients with mesothelioma and their families. They do this through education, support services, and helping patients determine whether they are qualified to receive financial compensation.

Susan G. Komen Susan G. Komen is a grassroots network of breast cancer survivors and activists fighting to save lives, empower people, ensure quality care for all, and energize science to find cancer cures.

The vast majority of healthcare professionals strive to provide the best care possible. Yet, despite the best intentions, not every encounter is perfect and medical errors can occur. The following organizations are committed to healthcare quality improvement and/or can help individuals cope with medical complications.

Resources

To help ensure that you receive compassionate care, the Schwartz Center has provided the following information, including links to online resources and organizations that can support and assist you. These resource sections are intended to be helpful, but are not meant to be an exhaustive list of all resources.

Agency for Healthcare Research and Quality The Agency for Healthcare Research and Quality (AHRQ) is a federal agency committed to improving the quality and effectiveness of healthcare services. The agency’s website offers helpful links to patient and consumer information on quality improvement. The agency has developed a patient fact sheet of 20 Tips to Help Prevent Medical Errors.

Medically Induced Trauma Support Services Medically Induced Trauma Support Services is a nonprofit organization that supports, educates, trains, and offers assistance to individuals affected by adverse medical events.

There are a number of resources available to you or a loved one when facing the end of life. Every patient and family member wants to be assured that the he or she will not suffer. The links below provide useful information to guide you or a loved one through the journey with appropriate help and support.  Most important is to start the conversation about end of life preferences early on when clear communication is still possible.

Resources

To help ensure that you receive compassionate care, the Schwartz Center has provided the following information, including links to online resources and organizations that can support and assist you. These resources are intended to be helpful, but are not meant to be an exhaustive list of all resources.

American Academy of Hospice and Palliative Medicine The Academy is the professional organization for healthcare providers specializing in hospice and palliative care who are committed to improving the quality of life of patients facing serious or life-threatening conditions. The organization has compiled articles written by healthcare providers that have been published in the Journal of Palliative Medicine and that provide valuable information for patients and family members.

Guide for a Better Ending Caring Connections is a program of the National Hospice and Palliative Care Organization that provides free resources on end of life care issues and services, including information on hospice providers and state-by-state advance directives.

Engage with Grace Engage with Grace is a nonprofit organization focused on improving end of life care through better communication. The organization encourages families to talk about end of life wishes at family gatherings, using five questions that can be downloaded from its website.

Hospice Foundation of America The Hospice Foundation of America provides information on hospice and coping with grief, loss, and end of life for healthcare professionals and lay caregivers.

Hospice Net Hospice Net provides information and support to patients and families facing life-threatening illnesses. The website provides resources to patients and their families about hospice, end of life, and bereavement.  It also includes a well developed section on children and grief.

Get Palliative Care.org The Center to Advance Palliative Care sponsors this website for patients and families facing life-threatening illnesses. The site is intended to be useful in the decision-making process and includes a comprehensive national directory of hospitals providing palliative care.

The Conversation Project The brainchild of Pulitzer Prize-winning journalist Ellen Goodman, the goal of The Conversation Project is to have every person’s end of life wishes expressed and respected.  It offers tools, guidance and resources to help people of all ages begin talking with their loved ones about their end of life wishes and preferences, including a “Conversation Starter Kit” and links to legal and medical documents to record these wishes and preferences.

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