INTERVIEW: Louise Knight, Director of Patient and Family Services, JHH Oncology

CAC: Please describe your general roles as the Oncology Social Worker at JHH.

Louise Knight: On the adult side of the Kimmel Cancer Center, the oncology social workers take care of the mental health of our patients and families, which is easier to refer to as psychosocial health. The social component can be related to community, financial, and insurance aspects. The other two categories are the spiritual and the practical. Our brochure includes all of the most important information about the type of support that we provide. We’re looking to provide those services to patients who have either self-identified or have recognized issues, problems, or needs. People are often very good about identifying a concrete or practical reason that would drive them to the office – that is typically how most people will self-identify. We identify categories on the brochure with simplistic, one-word phrasing that is at the appropriate adult reading level.

As an example, people may come to talk about one of the categories in the brochure, such as a money or legal issue, as opposed to being able to readily articulate what it is that they need in their own terms. This is how patients will come to talk to a social worker on the outpatient team.

We then might assess if there is an emotional or psychological issue going on within the patient or family. We may also further assess if there are spiritual needs, and can then refer to our highly skilled in-house chaplain or palliative medicine team. We become the assessor of what the patient’s needs are in addition to the item that the person originally came to talk to us about. We will look for in-house resources, community-based resources, or national resources based on these needs.

On the inpatient side, we see 100% of the admissions without the need for a request or referral. If there is an admission to the adult side of the Kimmel Cancer Center, a patient is going to meet with a social worker who will work with them until the time of discharge. In addition, the social worker is responsible for working with both the medical team and the patient’s family on discharge from the hospital, including where the patient is going and how they are getting there, while also identifying all of the emotional, psychological, and social issues that need to be addressed in order to make the discharge successful.

CAC: To summarize, the goal for the social work team is to prepare the patient for successful discharge, but also to make sure that all of the patient’s needs once they get home are addressed for outpatient care.

Louise Knight: Correct. The last thing one wants is a failed discharge. The domains with the highest request for assistance over the past 5-6 years are exactly what one would expect them to be and are mainly economic factors such as finances, mortgage payments, and medical insurance. The initiation of the Affordable Care Act, or ACA, presented a whole set of new challenges for everybody (i.e., how to navigate the ACA), including figuring out the unique systems within each state, since we care for patients from all across the country.

CAC: How have the changes and challenges in general medical care affected what the social worker can do for patients with cancer, including changes in insurance and necessary adjustments with patients living longer?

Louise Knight: There is a national debate about this issue. Aside from that, the real challenge is connecting innovative technologies and medications with reimbursement and insurance benefits. We’ve made great advances in cancer medicine and have developed technologies that allow cancer patients to live much longer than they ever would have in the past. While many of these patients do so with a good quality of life, there are some who face real challenges to their quality of life. When there are more challenges, and there is not a reimbursable system to compensate for those challenges, you can end up with patients who cannot be at home and care of themselves, but do not have another place to go or may not have access to enough services to bring to their home in order to provide care for them.

The evolution of the advancements in medicine have not been at the same pace as our reimbursement via the insurance industry. In summary, the advancements have outpaced reimbursement. While patients now live longer with cancer, they are not always self-sufficient and independent. The insurance industry and coverage options have not kept up with that challenge.

The other challenge that has received national attention is the cost of drugs. We’ve seen great advances in drugs such as anti-viral agents and others, but the costs for many drugs are extraordinary. Many companies in the pharmaceutical industry have stepped forward to help cover some costs, but this is not the case for all drugs.

Aside from the medical treatment for cancer, I think that patients would say that the greatest challenges for families facing cancer are financial. Families may have lost one or even two incomes, resulting in daily household bills being unpaid. They also may have minor children, and must plan for their care and needs. In summary, day to day and future finances may be severely impacted.

All of the family’s energy gets funneled in one direction, resulting in members of the family who may not have a parent at that special school function, or who cannot celebrate events in the same way as they used to, as the energy needed is diverted to providing cancer care and support.

CAC: What are the most rewarding aspects of your job as a social worker?

Louise Knight: To achieve longevity in oncology social work, one must have an understanding of mortality from one’s personal perspective. Many on our staff talk about the recognition that each social worker is helping one person at a time. If one is looking at the entire scope of work for a social worker, it can be daunting. A social worker needs to look at each patient and try to touch the life of each individual patient at a certain point in their illness, while recognizing that the dynamic is a fluid one. The social worker’s presence needs to be 100% with the patient and their family in order to achieve the outcome needed for that patient. In social work, the tool we use is self – we do not come with medications or a bag of tricks. The value of a social worker is found in the relationship with the patient and the hope that you are able to move that family and patient further along in their planning and preparedness for their goals and hopes. The goal may be to get home, and if a social worker is able to facilitate that, then one has been successful in the goal.

CAC: Do the social workers at JHH get a lot of positive feedback from patients to whom you provide social support?

Louise Knight: Periodically, we will get a call from a family. However, the nature of our work doesn’t typically generate the same level of outward appreciation that a physician may receive for example. Positive feedback is not what drives us to do this work…it is working with cancer patients and caregivers to help them where they are, identify their needs, help them articulate their hopes and coordinate community resources to help achieve these desires.

CAC: When you are treating an adult who has cancer, please discuss how you address how a parent’s cancer affects their children.

Louise Knight:

The important point is that cancer is an experience which impacts the entire family. We use the language of (patient) and speak specifically about the (patient) relation to illness stage, treatment and more…but in fact, we should be changing our language to be inclusive of the whole family.

Cancer in a family with minor children presents challenges which are unique overall. The age of the child of course drives where they are in their emotional and cognitive development and must be considered when engaging them within the cancer experience. However, even the youngest child will know there is an emotional difference within the home, there is an absent parent and more.

When talking to children about cancer…we often hear the worries of parents who feel they should avoid telling the child. Children are extremely perspective and know there is something wrong = different and without accurate information may make up the answer. These answers can sometimes be more alarming than the reality. Naming the illness as cancer is important. By calling it a “sickness or bug or illness” connects the child’s future “sickness, bug or illness” to be the same experience they witness for the parents. We often suggest the following: This is a special kind of illness called cancer…and you can’t catch it like a cold… The Drs are working very hard to help me feel better and I will be taking some really powerful medicine that may make me look different for a little while.

This gives enough information, names the illness, separates it from daily sickness and informs the child of what is being done to help the parent. Then wait…ask if they have questions….tell them they can ask anything they want in the future…and keep that door open. Check in with your child and let them know how you are feeling, as they are experiencing cancer too.