Person-Centered Work With Patients With a Life-Limiting Illness
by Kimberly Washington, MSW, LICSW, LSW
Working as a clinical social worker in the Washington, DC, area with patients diagnosed with life-limiting illnesses such as Huntington’s disease, Parkinson’s, multiple sclerosis, and Lou Gehrig’s disease (ALS) has taught me to be consistently dedicated to a person-centered approach to therapy with patients and their families. Person-centered care is a trend that has been building in the social work community over the last few years, and I had considered the idea of person-centered care as a decent and noble practice.
I now wholeheartedly trust patients as the most salient guides in developing their own treatment. My most valuable work with patients is to listen and learn from each one and let them determine their goals.
The person in person-centered care is more of an expert in what is best for them than I am. As shocking as this fact was to me, it has been liberating to let go of having to know everything about a patient I just met. As a result of my experience with my therapy patients, person-centered care has now become the foundation of my practice.
Over time, I observed that patients diagnosed with a prolonged terminal illness have a unique response to this medical situation based on many factors, such as their support system, belief system, the popularity of the illness in society, present mental health, resources, and many more influences. The patients all have different resources that affect the way they can adjust to the logistics of being ill, whether that means being immobile or determining issues like care in the home or choosing a long-term care facility. It is my role to take these influences into consideration, and walk with patients through their journey of illness and to help navigate the difficult places.
Many of the patients I have worked with in clinical and community settings tell me that the onset of their illness experience begins when the patient and/or their loved ones notice that something is different physically about the patient. They eventually visit with medical professionals and receive diagnostic tests to determine the reason for changes in their bodies. The moment the physicians give the difficult news that, yes, the test results and symptoms reveal that these patients have a life-limiting illness, their lives change forever.
Often, patients have shared with me that the fear of the possibility of illness has lingered as a dark cloud over them well before they get the official news. Many emotions settle in as they allow the news to work its way into their consciousness. Disclosing this personal information to loved ones can be one of the most difficult tasks after a diagnosis.
When told devastating news, others are bound to highlight the landscape of emotions that are already bubbling to the surface for these patients. These conversations with the loved ones often make the illness concept even more real, and leave the entire family with more questions than answers. I have explored how to express this kind of news with patients who have mounting anxiety around these conversations.
The question of “what’s going to happen next” often consumes the patient and family unit. Not knowing how to sort through these unanswered questions can lead individuals down a complex and winding road. Weighing through the murky waters of what if the worst happens, and “how long do I have,” likely requires a multi-disciplinary team approach to attend to the questions and ongoing patient care. From a mental health perspective, the clinician on the team must consider that patients may experience feelings of avoidance, anger, despair, anxiety, and numbness—or they may be ready to take on their illness and their physical symptoms with a new-found determination to beat the odds.
I have found that all of the emotions mentioned are normal and to be expected. However, high rates of anxiety, depression, and suicidal ideation are associated with prolonged terminal illnesses. Mood changes can be a result of these patients dealing with the uncertainty of their illnesses, or may be another symptom of the illness itself. Mental health support can play a vital role in assisting patients when their emotions become overwhelming and detract away from their functioning as they try to adjust to their new roles as patients. For example, several of my patients have needed help with saying their illness out loud and coming to terms with the fact that they are in a transitional stage of their health. Others have needed support in planning for life when they become immobile and the emotional distress that comes with this reality.
Social workers who provide case management can also be pivotal team members for patients during this difficult time. Patients often have no idea where to start as they parse out the necessary services required for care. They may need such services as medical specialists, legal supports, transportation, nutritional guides, and many other services. Dedicated social workers and case managers in many settings work with patients to sort out all these services and get patients linked to care. However, many busy social workers do not have the time built into their schedules to help patients sort through the crippling emotions during a life-limiting illness, particularly not long-term. In addition, in the past, family members and caregivers have sometimes been left out of the process altogether, as therapeutic services may be limited to the patient alone.
Providing wrap-around services that include more long-term mental health supports to the patient and the family unit has become a more person-centered approach in many mental health agencies. Research supports the theory that patients who are a part of a family system have better functioning when the entire family can be educated and attended to during the illness. My program, like many others, is now providing comprehensive long-term mental health services to patients and their families. I can track the service needs of patients and their families while providing emotional support. We have found that providing some case management triaging along with counseling is a more holistic approach.
Working with patients from “where they are” in a person-centered context takes on a whole new meaning when working with patients with a variety of illnesses. Their treatment needs may differ widely based on the stage of their illness experience. Treatment for a newly diagnosed, moderately ill patient may be very different from the treatment of an end stage, seriously ill patient. In addition, working with patients in various settings as a part of a multi-disciplinary team requires an added consideration of the approach to the staff in the setting. Each patient care setting has a culture of its own and requires that a clinician be mindful of how to work with the staff, as well as the patient, in that particular environment.
Assessing patients requires looking beyond the psychosocial factors that may be affecting their functioning. For instance, with Huntington’s disease, psychiatric issues can be directly related to the illness. Working closely with these patients’ psychiatrists is an essential aspect of assessment and treatment of Huntington’s patients. Moreover, monitoring these patients’ adherence to their medical treatment is often a priority, as well. With the complex clinical aspects of their care to consider, it is vital to focus on learning directly from them and tailoring treatment with this information in mind. These factors provide me with more proof that focusing on these patients’ specific treatment needs must be developed within an effective therapeutic relationship in which they and their family units feel as if they are driving the process.
Early on in my career, a part of my journey as a clinician was about figuring out what I needed to know as a professional in each job. Somewhere along the line, it became clear that my journey is not so much about knowing as about always learning. If you have a limited number of treatment approaches that you’ve mastered, it can be professionally intimidating to focus on the patient as your teacher. It can be even more frightening to take the extended time to allow patients to open up and share their thoughts and feelings over a long period of time.
Significant value is put on conducting brief therapy work in a short period of time in the context of our managed care system. Many clinicians don’t have the luxury of taking extended periods of time with patients. I’m fortunate that my program’s grant funding allows me the opportunity to build my therapeutic relationship with my patients. Rapport building with my patient has become an important priority in my practice.
I continue to use therapy techniques such as Cognitive Behavioral Therapy (CBT), Mindfulness, Conflict Resolution, Motivational Enhancement, and Systems Theory as the foundation for the tools that I use to assist patients. These tools are helpful in framing my practice into interventions that are evidenced based and effective. However, I’ve found that allowing patients and their families to be the guide for the treatment plan gives them much needed control over their lives, as an uncertainty and lack of control have become the norm for them. It also keeps me honestly engaged in intentional and active listening. I am always looking to my patients for cues on ways to join them on their journey.
Treating my patients from a person-centered perspective cures my need to solve everything for them. Many have the solutions and we are partners in discovering the road to those solutions. Even when they may be full of despair and feeling low, they continually express that they are more than a diagnosis. They are individuals who have many influences that may greatly affect their illness experiences. As their therapist, my role is to respect their desires and goals, and help them maintain optimal functioning in this context.
Kimberly Washington, licensed clinical social worker, has long held a deep interest in the connection between mental health and physical health. As the lead clinical social worker for the St. Jude’s Project, Kimberly is combining her interest in physical and mental health issues while spearheading an effort to build a broad network of clinical community support for patients with life-limiting illnesses.