HEIPAC

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Helpers in Being Your Own Best Patient Advocate

–Corrine Taylor, HEI board member

In June 2015, I was diagnosed with breast cancer that had already spread to my liver, bones, and lungs – what is known as metastatic breast cancer. At that difficult time, I was grateful to have my mother and my young adult daughter in the oncologist’s office with me for note-taking and emotional support. Their accompanying me to the appointment, which followed two mammograms and an ultrasound the prior week, allowed me to concentrate on what my doctor was saying and ask her questions when things weren’t clear. Immediately after the office visit, the oncologist showed me and my family where I would be getting chemotherapy infusions and introduced us to my main oncology nurse and a few other nurses on the team. I was to go in for my first treatment (infusions) two days later.

Upon arriving home, I realized I would need help from friends for transportation to my treatments. My mom was not up for driving into Boston and my daughter did not yet have her driver’s license. Thankfully, one of the first pals I notified of my diagnosis not only offered to drive me to my first treatment, but also arranged for another friend of ours to set up and administer a “Lotsa Helping Hands” (LHH) website page for me.

The LHH platform makes it easy for a patient’s family and friends to join a community of care, and for those who are local to get on a calendar to provide desired support: driving to and from appointments, delivering meals, picking up requested groceries, etc. (This was especially helpful before Lyft, Uber Eats, and Amazon Grocery Delivery! It had the added advantages of allowing me visits with loved ones and my not having to make the arrangements myself.) My friend who administered the LHH site posted information about when I needed to be picked up at home so that I would safely make it on time to my appointments, where to park, etc. Another friend summarized my dietary restrictions, food preferences, and nutritional needs, and had that information posted. Friends and family were able to read periodic updates I shared on LHH regarding my medical situation and life in general, and those who lived farther away often responded by email or with lovely cards that cheered me.

Friends supported me in other ways, too. One who is a nurse gave me a pillbox for each day of the week with sections for four times in each day. Another buddy presented me with a lovely leather journal in which to keep track of my medications. I did not even realize I would find these items helpful; it turned out they were essential! I cannot overstate how much the loving support of my family and friends has meant to me from that initial appointment when I got my diagnosis, through the first year and a half when we made extensive use of the LHH calendar, to today – nine years later – as I still use that pillbox and journal.

I have been fortunate to have experienced a relatively smooth medical journey so far. My health care provider assigned me an excellent oncologist from the beginning and then I was able to select her replacement when she retired. Communication with my oncologists has been easy for me. I feel comfortable openly and honestly sharing all my pertinent information at each oncology appointment and asking all kinds of questions. When my cancer metastasized to my brain three years after my initial diagnosis, again I was assigned great medical support, this time in Neurology and Neuro-oncology at a medical center just up the road from where I get treatment. My doctors communicate clearly with me, explaining test results, treatment options, and available changes as new medications become available. Thankfully, my doctors also communicate well with each other.

But what if a patient with a serious illness (let’s say you) is not so comfortable in communications with your doctors (and nurses)? Or your various specialty doctors seem to be telling you conflicting information? Who else might be available to help you understand what’s going on? If you don’t happen to have a friend who volunteers to set up a Lots of Helping Hands site for you, who else could help you with logistics? Most larger health care centers offer the services of several other supportive health care professionals. I discuss three here:

(1) Patient Navigator/Social Worker
(2) Care Manager
(3) Resource Specialist

My Patient Navigator briefly introduced herself to me in person at my very first chemotherapy session. She also gave me a printed message saying: “I will be able to assist you and/or your family with any concerns, questions, or needs regarding transportation, financial assistance resources, insurance inquires, prescription drug copay assistance programs, support groups, educational/resource materials, wigs/hair prosthesis, [our] on-line system, etc.” Additionally, she gave me a flyer about a workshop scheduled for six weeks later called “Look Good, Feel Better,” which focused on make-up, and wigs and other head-coverings for patients who go bald because of treatment.

In general, patient navigators coordinate services, provide support, help patients and their families understand information, and advocate for individual patients. Some patient navigators are “nurse navigators.” They have at least a two-year nursing degree, and can educate their patients about their conditions, treatments, side effects, and prescriptions. They provide patients answers to some medical questions and serve as a liaison with doctors.

Many health care centers also (or instead) offer the services of a Social Worker — masters-level health care professionals — who serve as a source of emotional support, counseling, and connection to resources that help patients (and their loved ones) find ways to cope with concerns beyond one’s physical well-being. These other concerns include patients’ self-image, work, family, friendships, and approach to living with a serious illness. Among other things, social workers in clinical settings connect patients to support groups, community programs, and financial resources, much as my patient navigator did.

While Social Workers, Patient Navigators, and Nurse Navigators typically focus on social support and patient advocacy, Care Managers aim to meet patients’ medical needs by coordinating their clinical care. They assess patients’ physical, psychological, and social needs; develop care plans based on those assessments; coordinate services and resources; monitor patient progress; and provide support to patients and their families.

I recall receiving a few phone calls from my care manager early in my cancer treatment. She was well informed about my medical case and asked me a few questions about myself and about my needs. I told her that I was feeling good about my treatment schedule, that I was comfortable getting my questions answered directly by my oncologist, and that I had no trouble with transportation to my medical appointments. Again, I was fortunate to really click with my doctors and have my supportive community on LHH. (By the way, other no-cost platforms — such as “CaringBridge” — can also ease the sharing of health news with family and friends; see the resources listed below.)

Because I was in such a good situation with my medical care and, initially, I was very busy, still working full time, I did not feel that I needed or wanted the extra support from the care manager. I told her so, and let her know that if things changed, I would reach out to her. I can certainly see how a care manager would be a great personal resource for many patients, though.

Additionally, some medical centers have a Resource Specialist, who is dedicated to helping patients from underserved communities navigate treatment in very specific sub-fields. For example, the Dana-Farber Cancer Institute now has five special programs; the newest focuses on lymphoma and multiple myeloma. Specialized patient navigators in these programs guide their patients throughout an appointment, from arrival to departure.

All these types of healthcare professionals may be available (for free!) at your health care facility or your facility might combine these roles and use other similar titles. Having a serious illness is challenging. Our healthcare system is complex. Avail yourself of these various caring specialists when you can use their support! If you want to educate yourself so you can be your own best health care advocate by reading current reputable information on your illness, rather than talking with a person at first, you should know that there are national associations dedicated to each of the serious illnesses. Here I provide just a few examples of resources (which the Social Worker in my Oncology Department kindly shared with me):

American Heart Association – heart.org/en/health-topics/caregiver-support
American Cancer Society – cancer.org/support-programs-and-services
American Lung Association – lung.org/help-support
Autoimmune Association – autoimmune.org/resource-center

Additionally, newer patients might appreciate a sympathetic ear, emotional support, and relevant information from a more experienced patient with a similar diagnosis and demographics. Various non-profit organizations provide free matching to connect mentors and mentees for one-on-one support. I have volunteered for the last four years as a mentor with “Imerman Angels” for cancer patients, talking by phone or texting with a few different mentees (by whatever means they preferred) over these years. When one mentee told me she felt confused because her specialists seemed to be giving her conflicting information, I helped her advocate for herself in getting those doctors to coordinate with each other.

I recently read that the Dana-Farber Cancer Institute offers a program called “SoulMates,” similar to Imerman Angels, but specifically for breast cancer patients. I understand that there are one-to-one support programs outside of the cancer realm, as well.

If these free resources do not offer enough support for you, and especially if you need help coordinating among specialists, researching options for care, understanding the second opinion process, or dealing with situations with complicated medical insurance coverage or billing issues, you may wish to obtain the services of a professional health care advocate. Massachusetts Health Care Advocates (MAHCA) and Greater National Advocates provide lists of available advocates in Massachusetts and nationwide, a summary of each one’s practice, and a link to their website. While there is a fee for these professional services, The Health Equity Institute: A Patient Advocacy Collaborative (HEIPAC) is working to provide free or reduced-price advocacy for patients with limited ability to pay.

Acknowledgements

I thank Emily Williamson, LICSW, in the Oncology Department of Atrius Health at Kenmore, in Boston, for helping me outline this piece on patient and caregiver support, explaining various roles, and describing her role as a social worker at Atrius Health, in particular.

Dr. Brita Lundberg, founder of the Health Equity Institute: A Patient Advocacy Collaborative (HEIPAC), invited me to serve on the organization’s board and represent a patient’s voice. I happily accepted the invitation to do so. I am grateful for her suggestion that I tell my own story here as a way for others to learn about self-advocacy and about other types of patient advocates.

References and Resources

“What are patient navigators and how can they improve integration of care?”

Lotsa Helping Hands is a care calendar website that coordinates meals and help for friends and families in need.

CaringBridge is a website that helps patients share health news with family and friends.

Imerman Angels offers free peer support to patients with any type of cancer.

The Dana Farber Cancer Institute offers the following services to patients receiving care there:

  • The Patient Navigator Program provides patients with gastrointestinal, breast, thoracic, gynecologic, lymphoma and myeloma cancers with support persons who can attend appointments and screenings with them;
  •  Cancer Care Equity program helps traditionally marginalized patients access clinical trials, treatment and support that might otherwise be unavailable to them;
  • Soulmates program: offers peer support for breast cancer patients.

Massachusetts Health Care Advocates: offers an extensive list of professional patient advocates in Massachusetts.

Disclaimer:
The suggestions given here are not intended as a substitute for the medical advice of your physician. The reader should regularly consult a physician in matters relating to his/her health and particularly with respect to any symptoms that may require diagnosis or medical attention. For additional questions, please call your healthcare provider for reliable, up-to-date information on testing, symptom management and support around all medical concerns.

–Corrine Taylor, HEI board member

In June 2015, I was diagnosed with breast cancer that had already spread to my liver, bones, and lungs – what is known as metastatic breast cancer. At that difficult time, I was grateful to have my mother and my young adult daughter in the oncologist’s office with me for note-taking and emotional support. Their accompanying me to the appointment, which followed two mammograms and an ultrasound the prior week, allowed me to concentrate on what my doctor was saying and ask her questions when things weren’t clear. Immediately after the office visit, the oncologist showed me and my family where I would be getting chemotherapy infusions and introduced us to my main oncology nurse and a few other nurses on the team. I was to go in for my first treatment (infusions) two days later.

Upon arriving home, I realized I would need help from friends for transportation to my treatments. My mom was not up for driving into Boston and my daughter did not yet have her driver’s license. Thankfully, one of the first pals I notified of my diagnosis not only offered to drive me to my first treatment, but also arranged for another friend of ours to set up and administer a “Lotsa Helping Hands” (LHH) website page for me.

The LHH platform makes it easy for a patient’s family and friends to join a community of care, and for those who are local to get on a calendar to provide desired support: driving to and from appointments, delivering meals, picking up requested groceries, etc. (This was especially helpful before Lyft, Uber Eats, and Amazon Grocery Delivery! It had the added advantages of allowing me visits with loved ones and my not having to make the arrangements myself.) My friend who administered the LHH site posted information about when I needed to be picked up at home so that I would safely make it on time to my appointments, where to park, etc. Another friend summarized my dietary restrictions, food preferences, and nutritional needs, and had that information posted. Friends and family were able to read periodic updates I shared on LHH regarding my medical situation and life in general, and those who lived farther away often responded by email or with lovely cards that cheered me.

Friends supported me in other ways, too. One who is a nurse gave me a pillbox for each day of the week with sections for four times in each day. Another buddy presented me with a lovely leather journal in which to keep track of my medications. I did not even realize I would find these items helpful; it turned out they were essential! I cannot overstate how much the loving support of my family and friends has meant to me from that initial appointment when I got my diagnosis, through the first year and a half when we made extensive use of the LHH calendar, to today – nine years later – as I still use that pillbox and journal.

I have been fortunate to have experienced a relatively smooth medical journey so far. My health care provider assigned me an excellent oncologist from the beginning and then I was able to select her replacement when she retired. Communication with my oncologists has been easy for me. I feel comfortable openly and honestly sharing all my pertinent information at each oncology appointment and asking all kinds of questions. When my cancer metastasized to my brain three years after my initial diagnosis, again I was assigned great medical support, this time in Neurology and Neuro-oncology at a medical center just up the road from where I get treatment. My doctors communicate clearly with me, explaining test results, treatment options, and available changes as new medications become available. Thankfully, my doctors also communicate well with each other.

But what if a patient with a serious illness (let’s say you) is not so comfortable in communications with your doctors (and nurses)? Or your various specialty doctors seem to be telling you conflicting information? Who else might be available to help you understand what’s going on? If you don’t happen to have a friend who volunteers to set up a Lots of Helping Hands site for you, who else could help you with logistics? Most larger health care centers offer the services of several other supportive health care professionals. I discuss three here:

(1) Patient Navigator/Social Worker
(2) Care Manager
(3) Resource Specialist

My Patient Navigator briefly introduced herself to me in person at my very first chemotherapy session. She also gave me a printed message saying: “I will be able to assist you and/or your family with any concerns, questions, or needs regarding transportation, financial assistance resources, insurance inquires, prescription drug copay assistance programs, support groups, educational/resource materials, wigs/hair prosthesis, [our] on-line system, etc.” Additionally, she gave me a flyer about a workshop scheduled for six weeks later called “Look Good, Feel Better,” which focused on make-up, and wigs and other head-coverings for patients who go bald because of treatment.

In general, patient navigators coordinate services, provide support, help patients and their families understand information, and advocate for individual patients. Some patient navigators are “nurse navigators.” They have at least a two-year nursing degree, and can educate their patients about their conditions, treatments, side effects, and prescriptions. They provide patients answers to some medical questions and serve as a liaison with doctors.

Many health care centers also (or instead) offer the services of a Social Worker — masters-level health care professionals — who serve as a source of emotional support, counseling, and connection to resources that help patients (and their loved ones) find ways to cope with concerns beyond one’s physical well-being. These other concerns include patients’ self-image, work, family, friendships, and approach to living with a serious illness. Among other things, social workers in clinical settings connect patients to support groups, community programs, and financial resources, much as my patient navigator did.

While Social Workers, Patient Navigators, and Nurse Navigators typically focus on social support and patient advocacy, Care Managers aim to meet patients’ medical needs by coordinating their clinical care. They assess patients’ physical, psychological, and social needs; develop care plans based on those assessments; coordinate services and resources; monitor patient progress; and provide support to patients and their families.

I recall receiving a few phone calls from my care manager early in my cancer treatment. She was well informed about my medical case and asked me a few questions about myself and about my needs. I told her that I was feeling good about my treatment schedule, that I was comfortable getting my questions answered directly by my oncologist, and that I had no trouble with transportation to my medical appointments. Again, I was fortunate to really click with my doctors and have my supportive community on LHH. (By the way, other no-cost platforms — such as “CaringBridge” — can also ease the sharing of health news with family and friends; see the resources listed below.)

Because I was in such a good situation with my medical care and, initially, I was very busy, still working full time, I did not feel that I needed or wanted the extra support from the care manager. I told her so, and let her know that if things changed, I would reach out to her. I can certainly see how a care manager would be a great personal resource for many patients, though.

Additionally, some medical centers have a Resource Specialist, who is dedicated to helping patients from underserved communities navigate treatment in very specific sub-fields. For example, the Dana-Farber Cancer Institute now has five special programs; the newest focuses on lymphoma and multiple myeloma. Specialized patient navigators in these programs guide their patients throughout an appointment, from arrival to departure.

All these types of healthcare professionals may be available (for free!) at your health care facility or your facility might combine these roles and use other similar titles. Having a serious illness is challenging. Our healthcare system is complex. Avail yourself of these various caring specialists when you can use their support! If you want to educate yourself so you can be your own best health care advocate by reading current reputable information on your illness, rather than talking with a person at first, you should know that there are national associations dedicated to each of the serious illnesses. Here I provide just a few examples of resources (which the Social Worker in my Oncology Department kindly shared with me):

American Heart Association – heart.org/en/health-topics/caregiver-support
American Cancer Society – cancer.org/support-programs-and-services
American Lung Association – lung.org/help-support
Autoimmune Association – autoimmune.org/resource-center

Additionally, newer patients might appreciate a sympathetic ear, emotional support, and relevant information from a more experienced patient with a similar diagnosis and demographics. Various non-profit organizations provide free matching to connect mentors and mentees for one-on-one support. I have volunteered for the last four years as a mentor with “Imerman Angels” for cancer patients, talking by phone or texting with a few different mentees (by whatever means they preferred) over these years. When one mentee told me she felt confused because her specialists seemed to be giving her conflicting information, I helped her advocate for herself in getting those doctors to coordinate with each other.

I recently read that the Dana-Farber Cancer Institute offers a program called “SoulMates,” similar to Imerman Angels, but specifically for breast cancer patients. I understand that there are one-to-one support programs outside of the cancer realm, as well.

If these free resources do not offer enough support for you, and especially if you need help coordinating among specialists, researching options for care, understanding the second opinion process, or dealing with situations with complicated medical insurance coverage or billing issues, you may wish to obtain the services of a professional health care advocate. Massachusetts Health Care Advocates (MAHCA) and Greater National Advocates provide lists of available advocates in Massachusetts and nationwide, a summary of each one’s practice, and a link to their website. While there is a fee for these professional services, The Health Equity Institute: A Patient Advocacy Collaborative (HEIPAC) is working to provide free or reduced-price advocacy for patients with limited ability to pay.

Acknowledgements

I thank Emily Williamson, LICSW, in the Oncology Department of Atrius Health at Kenmore, in Boston, for helping me outline this piece on patient and caregiver support, explaining various roles, and describing her role as a social worker at Atrius Health, in particular.

Dr. Brita Lundberg, founder of the Health Equity Institute: A Patient Advocacy Collaborative (HEIPAC), invited me to serve on the organization’s board and represent a patient’s voice. I happily accepted the invitation to do so. I am grateful for her suggestion that I tell my own story here as a way for others to learn about self-advocacy and about other types of patient advocates.

References and Resources

“What are patient navigators and how can they improve integration of care?”

Lotsa Helping Hands is a care calendar website that coordinates meals and help for friends and families in need.

CaringBridge is a website that helps patients share health news with family and friends.

Imerman Angels offers free peer support to patients with any type of cancer.

The Dana Farber Cancer Institute offers the following services to patients receiving care there:

  • The Patient Navigator Program provides patients with gastrointestinal, breast, thoracic, gynecologic, lymphoma and myeloma cancers with support persons who can attend appointments and screenings with them;
  •  Cancer Care Equity program helps traditionally marginalized patients access clinical trials, treatment and support that might otherwise be unavailable to them;
  • Soulmates program: offers peer support for breast cancer patients.

Massachusetts Health Care Advocates: offers an extensive list of professional patient advocates in Massachusetts.

Disclaimer:
The suggestions given here are not intended as a substitute for the medical advice of your physician. The reader should regularly consult a physician in matters relating to his/her health and particularly with respect to any symptoms that may require diagnosis or medical attention. For additional questions, please call your healthcare provider for reliable, up-to-date information on testing, symptom management and support around all medical concerns.