How an Oncology Social Worker Can Help

Mar 31, 2021 | Angie Murad, Patient Educator | @muradangie | Comments (12)

socialworkshutterstock)Article contributed by Mayo Clinic Florida oncology social workers Autumn Jones, Michelle Walsh and Abbie Demirbulakli

For people diagnosed with cancer, an oncology social worker is an important member of the health care team.  An oncology social worker provides counseling, education and information services, referrals to community resources and helps people navigate the health care system.

Taking Care of the Whole Person

For most people, a cancer diagnosis brings new feeling and experiences, and an oncology social worker can help people work through these aspects following a cancer diagnosis.  An oncology social worker understands that there are many aspects of a person's life that contribute to his or her cancer experience, such as a person's ethnicity, spirituality, and family situation, and that cancer affects each person in a different way.  He or she talks to people about the different aspects of adjusting to the cancer and helps find strategies to adapt to and manage health care concerns.  Talking with a professional who has helped other people manage similar situations may help a person find ways to improve his or her quality of life, manage fears, and find hope.  This process can happen through individual, couples and family counseling, support groups, and referrals to community agencies that have additional support programs.

Understanding New Roles and Responsibilities

A person with cancer may wonder how parents, children, friends and coworkers will react to the diagnosis.  An oncology social worker can help a person cope with these reactions.  People may also wonder if there will be changes in their ability and desire to keep up with the many responsibilities of their life, such as a demanding job, taking care of young children, or helping an older parent.  A social worker can arrange a meeting to talk about how those roles and responsibilities might change, and explore what kind of support a person may need while going through treatment.

Helping with Relationships

People living with cancer have questions about how their treatment will affect their relationship with their spouse or partner, as well as with their children or other family members.  An oncology social worker can provide couples other relationship counseling, during which people with cancer and their partners or family members may talk about the emotional changes they are going through, how they want to handle those changes, and what kind of support they want from each other and from other people.

A Bridge to the Medical Care Team

Another role of an oncology social worker is a liaison between the person with cancer and the medical team.  Because an oncology social worker has advanced training in cancer treatment and how these treatments affect a person with cancer, he or she can help people and their families understand the treatment options.  For example, an oncology social worker helps gather and organize the information people need to make decisions about their care and arrange a meeting with the patient, family members, and the medical team to discuss the patient's care and treatment options.  A social worker can also refer people to additional education resources and to community organizations that have information about cancer and treatment.

Accessing Resources

An oncology social worker helps people connect to the resources they need to find practical help such as transportation, housing, financial assistance, community resources and support groups.  For some people, this involves a referral to the financial aid office of the clinic, instructions for applying for disability, or an explanation of rights covered under the Family Medical Leave Act.

Prescription Assistance

Sometimes the cost of medications and cancer treatments can be expensive and at times appear inaccessible.  Our social work staff assists patients with location co-pay assistance programs through pharmaceutical companies or foundations.  In some situations, a patient's treatment may include a medication that is considered to be off label which is not covered by most insurance companies.  Social work staff can assist patients in navigating the off label process as well as exploring available options in making these medications accessible.

Adjusting to Changes

The oncology journey can take many unexpected turns.  The oncology social worker is there to provide support to families and patients throughout this journey including end of life issues beyond treatment.

Many find that the months after completing cancer treatment are especially difficult.  In addition to a slow physical recovery, there often are intense worries about future health and returning to a more normal life.  Oncology social workers can continue to work with individuals through the period of survivorship, and many people find this an ideal time to process the experience.  Others may join a support group for survivors and receive understanding and guidance from other people in similar situations.

Advance Care Planning

Advance Care Planning is a resource that is provided to our patients and families at no charge.  Trained Advance Care Planning Facilitators provide education and assist patients and families with completing documents as a living will and designation of a health surrogate.  Discussion of quality of life and treatment preferences are a very important part of this consult.

The Education of Oncology Social Workers

Oncology social workers have a Masters Degree in Social Work (MSW) from an accredited university.  In addition they are licensed clinical social workers which means they have at least two additional years of training and supervision in working with people in a clinical setting.  They also have training in cancer care through continuing education and extensive orientation.

If you feel you could benefit from meeting with an oncology social worker, ask your provider for an appointment to meet with one.

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Do most hospitals and oncology practices have an oncology social worker? If not, where can a patient find one?

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@becsbuddy

Do most hospitals and oncology practices have an oncology social worker? If not, where can a patient find one?

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Becky, social workers who specialize in oncology are commonly a member of the cancer care team at cancer centers and large oncology department.

@michellewalsh, can you share how patients get referred or can self-refer to an oncology social worker at Mayo Clinic?

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@becsbuddy

Do most hospitals and oncology practices have an oncology social worker? If not, where can a patient find one?

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Hello Becky,
Thank you for your question. The role of the social worker many times depends on the provider and location. Hospitals usually have social workers on staff to assist with discharge planning when patients need further assistance. Many larger oncology centers have licensed clinical social workers on staff to assist patients for a variety of reasons during and after treatments. Patients and caregivers should ask if this service is available in their center and request a consult if needed. If your center does not have a social worker on staff, some organizations can assist you with locating a counselor or social worker that is covered by your insurance and can meet your needs. The Association of Oncology Social Workers provides a list of resources for patients and their families. Many non-profit organizations offer free services online and by phone/video.

Some of the non-profit organizations that can provide assistance in locating a counselor or providing free services include:
Cancer Support Community (https://www.cancersupportcommunity.org/cancer-support-helpline)
Cancer Care (https://www.cancercare.org/casemanagement)
Be The Match (https://bethematch.org/patients-and-families/support-for-you-and-your-family/one-on-one-support/counseling-services/)
Leukemia and Lymphoma Society (http://https.org/support/other-helpful-://www.llsorganizations/patient-and-caregiver-resources-support-and-counseling)

I hope these resources are helpful.
Michelle Walsh, LCSW
Oncology Social Worker

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@michellewalsh

Hello Becky,
Thank you for your question. The role of the social worker many times depends on the provider and location. Hospitals usually have social workers on staff to assist with discharge planning when patients need further assistance. Many larger oncology centers have licensed clinical social workers on staff to assist patients for a variety of reasons during and after treatments. Patients and caregivers should ask if this service is available in their center and request a consult if needed. If your center does not have a social worker on staff, some organizations can assist you with locating a counselor or social worker that is covered by your insurance and can meet your needs. The Association of Oncology Social Workers provides a list of resources for patients and their families. Many non-profit organizations offer free services online and by phone/video.

Some of the non-profit organizations that can provide assistance in locating a counselor or providing free services include:
Cancer Support Community (https://www.cancersupportcommunity.org/cancer-support-helpline)
Cancer Care (https://www.cancercare.org/casemanagement)
Be The Match (https://bethematch.org/patients-and-families/support-for-you-and-your-family/one-on-one-support/counseling-services/)
Leukemia and Lymphoma Society (http://https.org/support/other-helpful-://www.llsorganizations/patient-and-caregiver-resources-support-and-counseling)

I hope these resources are helpful.
Michelle Walsh, LCSW
Oncology Social Worker

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@michellewalsh, such a wealth of information. Thank you.
I also want to underline your point that social work services are available not only to the patient, but also for the caregivers or care partners support the patient. So important for family members to know.

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Thanks, but cancer is not the problem now...only complications from radiation damage in the 80's. Now it is drastic heart failure. My 66 year old daughter takes handfuls of medications, but still breath getting shorter, energy lower. Needs heart transplant, but radiation scarring makes operation too risky, according to Oklahoma Heart Institute. Am hoping research on right ventricle insert (?) might be able to help. Thanks for listening. Ida Lundy

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Thanks for posting this article. I feel like I have been holding my breath since Oct 2019. My treatments were working for a while and then in March 2020 same time as COVID hit my treatments stopped working. Started another treatment, while on that one everything was going well. Then a few months later that treatment also stopped working. Now on yet another treatment plan. At the Mayo Clinic that I go to I was given a list of groups, however none of them seem to fit my cancer diagnosis. I do not recall there being an Oncology Social Worker being offered, there may have been. I feel I need someone to talk to to help me thru all of this.

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@magene91sy

Thanks, but cancer is not the problem now...only complications from radiation damage in the 80's. Now it is drastic heart failure. My 66 year old daughter takes handfuls of medications, but still breath getting shorter, energy lower. Needs heart transplant, but radiation scarring makes operation too risky, according to Oklahoma Heart Institute. Am hoping research on right ventricle insert (?) might be able to help. Thanks for listening. Ida Lundy

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Hi Ida,
I'm sorry to hear that your daughter is still dealing with radiation damage from cancer treatments, resulting in drastic heart failure. Cancer treatment-induced heart disease does happen. There is a discussion on Mayo Clinic Connect dedicated to it here:
- Cancer Treatment Induced Heart Disease https://connect.mayoclinic.org/discussion/radiation-induced-heart-disease/

The cancer education team also posted a related blog and video here on Mayo Clinic Connect. See
– Cancer Treatment and the Heart https://connect.mayoclinic.org/page/cancer-education-center/newsfeed-post/cancer-treatment-and-the-heart-1/

Has your daughter been seen at a Cardio-Oncology clinic? Have you and your daughter considered a second opinion regarding her qualification for a heart transplant? May I ask what type of cancer your daughter had?

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@klpetts

Thanks for posting this article. I feel like I have been holding my breath since Oct 2019. My treatments were working for a while and then in March 2020 same time as COVID hit my treatments stopped working. Started another treatment, while on that one everything was going well. Then a few months later that treatment also stopped working. Now on yet another treatment plan. At the Mayo Clinic that I go to I was given a list of groups, however none of them seem to fit my cancer diagnosis. I do not recall there being an Oncology Social Worker being offered, there may have been. I feel I need someone to talk to to help me thru all of this.

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Mayo Clinic patients or family members can ask their provider, nursing staff or front desk staff to send the social work department a note that they would like to see a social worker and we will schedule a consult.

You can also call the social work department directly at the location where you are seen at Mayo Clinic
Mayo Clinic Florida: 904-953-6831
Mayo Clinic Minnesota: 507-284-2131
Mayo Clinic Health System: 715-838-3139

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@colleenyoung

Hi Ida,
I'm sorry to hear that your daughter is still dealing with radiation damage from cancer treatments, resulting in drastic heart failure. Cancer treatment-induced heart disease does happen. There is a discussion on Mayo Clinic Connect dedicated to it here:
- Cancer Treatment Induced Heart Disease https://connect.mayoclinic.org/discussion/radiation-induced-heart-disease/

The cancer education team also posted a related blog and video here on Mayo Clinic Connect. See
– Cancer Treatment and the Heart https://connect.mayoclinic.org/page/cancer-education-center/newsfeed-post/cancer-treatment-and-the-heart-1/

Has your daughter been seen at a Cardio-Oncology clinic? Have you and your daughter considered a second opinion regarding her qualification for a heart transplant? May I ask what type of cancer your daughter had?

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She goes to the advanced heart failure clinic in the Oklahoma Heart Institute. Have not had a second opinion. Type of cancer was breast cancer. Radiation protocol at the time was irradiating the medialstinal nodes and subclavicular nodes. She had an aortic valve replacement, biological, in 2015 and shortly thereafter went into right heart failure. Multiple pleural effusions with chest tubes that caused more scarring. Oklahoma Heart says there is too much scar tissue for a heart transplant. She has a mitral clip to reduce regurgitation, a synchronizing pacemaker with a defibrillator and cardio-mem in the pulmonary artery.
If you feel that it would be worth pursuing, we would like to hear from you. We are also very interested in research on right-heart pump. Thank you.

REPLY
@colleenyoung

Hi Ida,
I'm sorry to hear that your daughter is still dealing with radiation damage from cancer treatments, resulting in drastic heart failure. Cancer treatment-induced heart disease does happen. There is a discussion on Mayo Clinic Connect dedicated to it here:
- Cancer Treatment Induced Heart Disease https://connect.mayoclinic.org/discussion/radiation-induced-heart-disease/

The cancer education team also posted a related blog and video here on Mayo Clinic Connect. See
– Cancer Treatment and the Heart https://connect.mayoclinic.org/page/cancer-education-center/newsfeed-post/cancer-treatment-and-the-heart-1/

Has your daughter been seen at a Cardio-Oncology clinic? Have you and your daughter considered a second opinion regarding her qualification for a heart transplant? May I ask what type of cancer your daughter had?

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As an addendum to our previous comments.... . Being a retired nurse she can speak way better about medical issues than I can at my 91 years. Thanks so much for your reply.

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