Caregiver Story: Shared Decision-Making, Patient- Centered Care and Coping through the Eyes of a Nurse Navigator
To put it mildly, Lillie Shockney’s credentials are impressive. She is a University Distinguished Service Professor of Breast Cancer and full professor within the Department of Surgery at the Johns Hopkins University School of Medicine. She is also the co-developer of a program called Work Stride - Managing Cancer at Work, with Johns Hopkins Healthcare Solutions. She worked as the administrative director of the breast center at Johns Hopkins for over 20 years as well as the director of their cancer survivorship programs for 7 years. Her total time working at Johns Hopkins exceeds 40 years. She founded the Academy of Oncology Nurse and Patient Navigators 11 years ago. In simple terms, she works as an oncology nurse navigator and patient advocate.
Aside from her wide career accomplishments, Lillie knows what it is like to get news from a doctor that each patient fears. She is a two-time breast cancer survivor and was part of a diverse caregiving team for her dad during his battle with prostate cancer, which spread to other parts of his body. She knows what it is like to be both a cancer patient and a cancer patient caregiver.
In her role as an oncology nurse navigator, she helps people with cancer navigate the hospital and human aid needs that come along with having cancer. She helps with decision making, so that it is a shared decision-making process, helping to plan care and advocating for the patient with the other members of the care team. Through her work, she has seen many patients with barriers to their care that may include health insurance, cultural and learning challenges or fears that may cause a patient to decline recommended care. Nurse navigators strive to find all the barriers to care and get rid of them quickly so the patient has no delays in care.
In her work and through her caregiving role, Lillie focuses on patient-centered care. Lillie says,
The patient is more than their diagnosis. They had a life, and we want them to still have a life while being treated for this disease. Do they have a family? What is important to them? What are they most worried about? What brings them joy?
All those things need to be factored into the health care planning, but most importantly, those goals of care need to be understood. I feel as if it is of great value to sit down with the family to highlight what the patient desires, and that the patient should make choices together with the health care team. It should not be driven by adult children saying, “Dad, I want you to do this for me.” Because that really is not fair. It is of great value to allow your loved one to take the lead.
Lillie is always thinking of new ways to care for patients and their loved ones with advanced disease.
She has carried out many retreats for breast cancer patients and their family caregivers over the years. She conducted a retreat for patients and their spouses dealing with prostate cancer too. Feeling out of control can be normal when faced with cancer. Through Lillie’s work, she hopes to give cancer patients and their loved ones the tools and support they need to maintain a good quality of life.
Stressed about money, romance, urine leaks, palliative care or how to navigate? Try talking about it.
Support groups may help the emotional well-being of men who have prostate cancer. This can be done in person, through social media or through online cancer organizations. Men in prostate cancer support groups may be of help because they have prostate cancer too. It may help you to talk with other men who have managed similar concerns. These men may offer information, hope and even laughter during your prostate cancer journey.
Hope is important during advanced prostate cancer. Hope is a way of thinking, feeling and acting. It is a tool for managing and adjusting to an illness as serious as cancer. Men with advanced prostate cancer can still have hopes and dreams, even if these might have changed since diagnosis. If you feel hopeless, consider talking to a licensed therapist who knows about working with patients who have cancer. You may choose to ask your health care team about seeking the help of a therapist.
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