The Secrets of Hospice Patients

by Lizzy Miles

Can you keep a secret? Do you promise not to tell? Hospice patients and caregivers sometimes divulge information to a singular hospice staff member. We are bound by HIPAA not to talk about patients outside of what is necessary to provide care. How do you determine what is “necessary”? What about within the team though? Is everything you hear fair game for the rest of the IDG group, or are there some things you should keep to yourself? In this article, I’ll explore criteria you can use to determine the best course of action with confidential information you hear from a patient or caregiver.

The Secret I Told

As with all of the articles I write for Pallimed, this one was inspired by my experiences as a new hospice social worker. A patient was assigned to me from another social worker because of an internal restructuring. The patient had a reputation among the team as being a “challenge.” The chaplain on the team was also new to the patient. Within the first few weeks of our care, the chaplain started to frequently allude to the patient having revealed something significant, but he would not expand.

Tip #1: There is no reason to let your fellow staff members know that you’re keeping a secret if you don’t plan on sharing any part of the information. If you are going to keep a secret, then keep it.

I got to know the patient myself, and I built a trusting relationship. She revealed to me a history of multiple past traumas in great detail. I kept her stories to myself. She allowed me to take notes (mostly for my own memory). I determined initially that there was no need to share any details of her trauma. Her physical condition worsened, and it was recommended that she receive breathing treatments. Nursing staff reported that the patient “freaked out” during these treatments and became very anxious. The nursing staff was frustrated because they felt the patient would benefit from the treatment, but she did not want it. It did not take me long to recognize the connection between the patient’s fear of the breathing treatments and her trauma history.

Tip #2: If the secret is relevant to the Plan of Care, consider sharing information at a high level that will help staff to understand patient behavior.

I did not have to share the details of the patient’s trauma, but I did inform the team that the patient’s trauma history was affecting her acceptance of the breathing treatments. This information helped the staff to have empathy for the patient and her fear of the breathing treatments.

Other Patient Secrets

Hospice patient and caregiver secrets that I’ve heard fall into three categories: past acts, personal feelings, and current behaviors.

Past acts: Thankfully, I’ve yet to have anyone confess to a crime, so I cannot speak to what to do in that type of situation. If someone is experiencing extreme guilt for something they have done in the past, or how they have treated someone, I will coordinate with the chaplain to be sure that we are providing support as the patient or caregiver works through an issue. Oftentimes, there is a faith-based component to these worries. The details of these stories are not relevant to the Plan of Care, and therefore, not necessary to share in any form.

Tip #3: If patient feels guilty about something they have done in the past, but they have not yet revealed details, I might share with the team that the patient is working through an unkown issue. This allows for all team members to be ready to provide emotional support should the patient divulge information while they are providing care.

Sometimes it is the hospice aide or volunteer who hears the patient’s secrets. I do encourage these team members to share with the social worker or chaplain what is happening. The aide or volunteer may not be comfortable with the burden of the information that they have received, and so it is good for the social worker or chaplain to provide support to the staff that is providing support to the patient. Despite our best efforts, there are some patients who may not ever reveal to the social worker what they have told others. This is okay, as long as the social worker is apprised of the situation and adjusts the Plan of Care accordingly, if necessary.

Personal feelings: It is not uncommon for hospice patients or caregivers to have “negative emotions” such as anger, guilt, resentment, apathy, fear and/or shame towards others or themselves. Patients and caregivers can feel badly about the emotions they are experiencing. A big part of the social worker’s job is normalize feelings. Patients and caregivers will not expressly tell you not to reshare these feelings, but it is not uncommon for staff to be “caught in the middle” when the feelings are directed towards their own family members. It is not our place to get involved and share these thoughts with the other family members.

Tip #4: If appropriate, encourage patient/caregiver to speak about their feelings with the person directly.

Tip #5: Consider how the expressed feelings may affect the best care possible for the patient and family. For example, expressions of resentment can be an indicator that a caregiver might be a candidate for a respite break.

Remember, share only what is necessary.

Tip #6: Do not gossip with team about patient conflicts. Every provider that is in the position to hear secrets should have an outlet for their own self care. Social workers should seek supervision, chaplains have supportive networks, both could use journaling.

Current behaviors: Some patients or caregivers will reveal something to the hospice staff about behaviors. Hospice patients and caregivers sometimes will not tell their providers of alcohol, tobacco and/or current/past drug abuse. There is a common fear of judgement, or scolding. They don’t know that as hospice providers, we’ve seen it all. That’s not to say we should always look the other way. A patient’s present alcohol use or past drug use could interact with their medications. Even unreported over the counter medicines can affect prescribed medicines. It is in the patient’s best interest that the case manager knows about these things.

Tip #7: Keep the case manager informed on health behaviors that could affect the efficacy of medications and Plan of Care interventions.

Unfortunately, not every family member is a willing participant in a patient’s care. Sometimes patients can be in home situations that are less than ideal. Hospice staff members have to address signs of abuse or neglect. Hospice staff can be in the middle of family situations in which there is the threat of physical violence. There are also home situations in which there is suspected drug diversion; caregivers, as well, can be known to be using or abusing alcohol and drugs. We need to assess how this impacts their ability to provide care for the patient. In any of these types of situations, the hospice staff member needs to coordinate with the clinical manager and the team regarding what we know.

Tip #8: Keep the team informed of any behaviors that could impact the safety of the patient or hospice staff.

Ultimately, the simple barometer for whether to reshare can be measured by answering these questions:

• What is the purpose of my sharing this information?
• How does this impact the Plan of Care?