Tuesday, October 28, 2014

Why Hospice Social Workers Should Assess Pain

by Lizzy Miles

I always assess patients for pain. I believe all hospice and palliative care social workers should assess the patient’s pain during every visit. While some believe pain assessment is a best practice for social work assessments, not every hospice manager agrees. Unfortunately, some managers may even consider this a boundary violation. A plan of care which includes standard social work assessment of pain can be helpful to the RN case manager, however. There are a number of scenarios where a social worker may be privy to pain issues even before the nurse is.

When patients reveal pain to me, my first question always is, “have you told the nurse about your pain?” It used to surprise me how frequently patients admitted they hadn't told the nurse about pain. Based on my own experience, these are the different types of situations where social workers may be the first to know about a patient's pain.

Unwilling to take pain medicine

This is perhaps the most common situation in which the social worker might first be privy to a patient’s pain issues. Patients know that social workers do not administer drugs and therefore we are not a threat to their anti-medication stance.  I have seen patients say they have no pain simply because they were afraid if they admitted pain they would be told by the nurse to take medicine. This is a false assumption of course, however it takes time to build trust. Patients don't automatically know that the hospice team will respect their wishes to not take medicine.

Social workers can inform patients that even if they choose not to take medication, it is still helpful for them to let us know when they are in pain. There may be non-pharmacological interventions to their pain issues which can only be offered if we are aware they are in pain.

The need to be tough

Patients might deny pain because they were trained to push through their pain during their military service, for example. Besides military service, there are cultural, religious or self-image factors that can contribute to an individual believing they need to try to suppress expressions of pain. The pain still exists, but the patient does not admit to it at first.

The social worker may have an easier time discovering the patient has pain because our visits are formatted differently. The hospice nurse has vitals, questions and multiple assessments to complete during their visits. If they ask a patient if he has pain and he says no, the nurse might move on to the next question. Social workers have a greater luxury of probative conversation during their visits. I can't speak for all social workers, but I would not hesitate to point out to a patient when their words were inconsistent with their body language. “You say you don’t have pain, but you wince when you move your arm.”

Interestingly, once we break the initial barrier to get a patient to describe their pain, they usually will be more forthcoming regarding pain to the nurse during future visits.

Unrelated chronic pain

If a patient has lung cancer, for example, they may “expect” their pain to be in their chest area. If they also, for example, have longstanding arthritic pain in their knee, they may differentiate their expected pain from their known pain. I have had patients who tell me they don’t have pain, but after discussion, I'll find out that they have chronic pain. Pain is pain. The patient’s denial of pain comes from a misunderstanding that hospice nurses are only there to help with their hospice diagnosis. Hospice nurses are the eyes and ears of the patient’s doctors and can facilitate discussions with the patient’s medical provider regarding other health issues. This can only happen if the nurse is aware of the chronic concerns. The social worker can also be the eyes and ears of the hospice nurse when they're not there. If patients only could see the amazing interaction and coordination of care between medical professionals on their behalf!

Lack of updates from the family

During the admission process, we provide a list of situations in which family members should call the hospice nurse. I know that the nurses and the social workers usually reiterate our availability every time we visit. Still, there are times when I have gone to the house and am the first one to learn of a patient’s pain or pain control issues. The nurse is not going to know that the patient’s condition changed between visits if the family doesn’t call.

Here are some reasons why families don’t call:
  • Family is uncertain about administration of medication. You know what it’s like when someone is showing you something and you don’t quite get it, but you’re embarrassed to admit that? It happens. Family members may also think during the education they are comfortable with the nurse’s instructions, but then when the time comes to administer medication they get nervous.
  • Many family members are new to caregiving. If patient is unable to verbalize pain, the family member may not recognize nonverbal signs of pain.
  • Patient has pain but family is fearful of patient being “drugged up” and chooses not to administer medication. This is another situation in which the family might feel more open to talk to the social worker because they don’t necessarily associate us with the medical care. 

Long term care barriers to pain control

Hospice staff visit patients wherever their “home” is. Many elderly hospice patients reside in assisted living or nursing home environments. Assisted living facilities are not necessarily set up to be medical facilities and may have limited on-site nursing staff. While nursing homes have a higher staff to resident ratio, there can still be pain control challenges for hospice teams. The hospice team relies on the facility as the “proxy family” to keep us informed.

However, there may be times when the hospice social worker is the one who identifies that the patient’s pain management needs have changed:

PRN medicine

If a hospice patient only has intermittent pain, the patient may be prescribed medication on a PRN (as needed) basis. When the hospice nurse visits, they assess pain and they act accordingly to obtain and administer medication as needed. When a social worker visits, we are not able to give medication; we need to ask a facility nurse. This is where opportunities can be identified by social worker thinking about pain.

For example: SW might approach a facility nurse and share that a patient appears to be in pain. The SW might describe the patient’s moaning, her furrowed brow or clenched fists. The following sample response statements a social worker might hear from facility staff are potential signs that pain medication may need to be reviewed by the hospice case manager:

          “I can’t give her anything. I just gave her medicine an hour ago”
          “She doesn’t have medicine scheduled”
           I can’t give medicine and the nurse is in a meeting”
          “I can only give medicine if she has a temperature over 100”

Scheduled medicine

Even scheduled medicine in facilities can become an issue if the patient has a change in condition and the medicine is not holding. A hospice social worker who understands and is aware of pain issues will be able to notify the hospice nurse of a change in condition. In fact, social workers could happen to be the first ones to see a change in condition.
  • The primary contact for the patient at a facility is often the aide. If the patient is not verbal, the aide may not always be trained in the more subtle signs of patient pain.
  • At most assisted living facilities, the nursing staff may be stretched thin and may not be able to check in frequently. (Be careful that any communication or offer to help does not lead to blaming a well-intentioned facility staff member who truly does not have all the time or resources to care for all patients.) 

The patient has pain…now what? 

A patient has told me they have pain. I ask them to give it a number. I ask them to describe the pain. If patient is in a facility, I would notify the facility nurse. If patient is at home, I make a judgment call to determine whether to call the hospice nurse now or later. I ask if the patient has medication they can take. If I learn at that time that the patient does not want to take medication, I will wait to inform the nurse until after the visit. If the patient does not have medication, or does not know how to administer, or has a pain level over 4, I will call the nurse during the visit. I do this so the nurse can further assess the pain with the patient over the phone.

The social worker involvement in pain assessment is purely to provide additional information to RN case managers. Social workers should be very careful to recognize their role in pain control is not to give information or education, but to receive.  Social workers should reinforce with the patient the need for them to share their concerns about pain or medication with the RN case manager.

If social workers are the first to hear of pain issues from or about a patient, the social worker would want to inform the patient that the social worker will be communicating the new information to the RN.

Ultimately, the best care that the hospice team can provide to the patient and family is a holistic approach by an integrated, coordinated team that works with and not against the family and/or the facilities.

Photo Credit: PAIN Knuckle by Steven Depolo (Flickr) Creative Commons 2.0
Photo Credit: LEGO Assessment Tool by Brendan Powell Smith (Flickr) All rights reserved

Lizzy Miles, MA, MSW is a hospice social worker in Columbus, Ohio best known for bringing the Death Cafe concept to the United States. You can follow her on Twitter here.

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