Disability Rights Oregon

March 11, 2015 Focus Group Results

Introduction and Methodology

On March 11, 2015, Disability Rights Oregon (DRO) conducted a 90-minute focus group to hear about experiences with mental health treatment in hospital emergency departments and in hospitals. Eleven individuals participated; DRO staff facilitated the session. In order to participate, individuals must have received treatment in an emergency department and/or inpatient hospital related to behavioral health concerns.

All feedback was grouped together so that no individual can be identified. Those results were shared with the team planning a new psychiatric crisis and acute care facility in Portland, Oregon. The results also inform DRO’s advocacy efforts.

Throughout this document, the abbreviation “ED” has been used in place of “Emergency Department.”

Results

How have you described to family or friends your experience or experiences with treatment for behavioral health concerns in an emergency department and/or inpatient hospital?

Appalling
Horrible
Demeaning
Shocking

Several participants said that they simply cannot speak about the experience to friends and family because it’s either too painful to talk about, or their family and friends are unwilling to acknowledge the experience.

“It took me a whole year to even speak about it”
“I can’t talk about it. It’s taboo”
“It’s not accepted. It’s not cancer. It’s like, ‘you don’t have cancer so you’re not really suffering.’”

What was most successful, most helpful, most positive about the experience?

It was a wake-up call. I realized I didn’t want to be on medications that I had been taking for ten years.
It was helpful to hear people’s stories. I was able to use their stories to help my family understand my experience.
Healing through peers
Having one on one time with a person, asking questions --- this led to a new self-awareness
Developing an ability to advocate for one’s self
I as propelled forward by the negative experience

Aspects of the experience

Participants were asked for feedback and insights regarding specific aspects of their experiences.

Arrival

Ways that participants arrived at the emergency department in their most recent experience:

Ambulance (3)
Employer/Friend/Family (4)
Police (4)
Walk-in (1)

Several participants described rough, insensitive treatment by police. One person reported that the police beat her up. More than one participant said that they were initially handcuffed, but the handcuffs were removed after they promised to comply with directions.

Two participants reporting trying to seek help voluntarily at an ED and being told by the front desk: “You can only get help if you’re arrested or bleeding,” or “You must be suicidal or homicidal to get care.”

Once they entered the ED, participants described being required to remove their clothes and relinquish their belongings. One person complained that she had to take off her clothes even though she was there voluntarily. On the contrary, another person reported that his family was allowed to stay with him, and that staff didn’t make him remove his clothes right away.

Other concerns included the following:

Staff kept cycling through and repeating the same questions.
Doctors didn’t listen to the patient’s account of her co-occurring medical condition. They said “your white blood cell count is very high, we’re going to need to run tests.” She kept saying, “I know, that’s because I have leukemia.”
The participant was kept awake for numerous procedures, but what she really needed was to sleep.
“What I remember is a locked room, cameras, and blood tests.”

A number of people expressed concerns about access to food in the ED.

One participant described waiting 10 hours without food, and then being told to eat someone else’s food that was left on the floor.
Another participant said that she was told not to leave the hold room. Finally, she asked for food and staff said that it had been left outside her door, but taken away when she didn’t come out to get it.
One person said that she was so upset about being held involuntarily that she didn’t eat for a week.

A common theme was the lack of communication with patients. Several participants described being left in a hold room with no idea of how long they would be there or what to expect next.

Admitting to Inpatient

Boarding times (waiting in the ED for an inpatient bed) ranged from 2 hours to two nights.

Seclusion or Restraint

Participants seemed to agree that the hardest part of being in a hold room was the extreme sense of isolation. One person recalled thinking that jail would be better because at least there he could have some interaction. Others described the benefit of staff coming in and out to check periodically (as compared to monitoring the patient via video). Seeing a person face to face made a big difference. One participant said, “I was just handcuffed to the bed for a long time, no one came in, they just watched me on the camera.”

Recommendations:

Several participants were offered the opportunity to debrief after seclusion or restraint and found that to be very helpful.
Staff should enter the room regularly and communicate with the patient.
The Hold room needs a window and a clock.

Medication

Several participants reported positive experiences regarding medications at the hospital. For example, one person had an opportunity to learn how to use medications in the hospital. Another reported that when she didn’t want medications, the treatment staff didn’t force it.
Others described being restrained and medicated.
Others described lack of sufficient time and communication with the prescribing doctor. (ie: “In seven days at the hospital, I only had the opportunity to see a doctor one time.”)
Three participants stated that the hospital doctor took away helpful medications that they had been taking prior to the hospitalization. Another participant reported that the doctor abruptly changed medications.

Treatment and Quality of Experience

Many of the comments focused on the way patients are treated and the language that treatment staff used. One gentle, sensitive staff person can make a huge difference. And, one rough, insensitive staff person can have a very damaging impact. One participant described the difficulty of dealing with continuously rotating staff, unfamiliar faces, and mix of personalities.

A number of participants described the disrespectful language that was used to describe them.

“I heard staff making fun of other patients.” “ Staff talk about you without discretion”
They used final, throwaway language to describe me: gravely disabled, irretrievably broken”
Cops said terrible things
“I was crying and a new doctor passed by and said ‘ Oh, you seem like a sad guy.’ That really stuck with me.”
“No one listened.”

Other complaints included argumentative staff, blaming the patient, and retaliation after family members complained about the patient’s treatment. One person noted that she was initially held on a medical floor, and that the treatment there was much better as compared to the psychiatric unit. A common theme was the failure of staff to listen, communicate, and see the whole person.

Several participants described the positive impact of good treatment by staff. One person described the staff as creative, spontaneous, willing to think outside the box. One person described the impact of one good intern. Another participant said that a security guard stood up for her and helped her keep her phone.

Lack of communication and interaction was a common theme: “there was no one to talk to and no treatment. I was just held.”

Participants shared a number of recommendations to improve treatment:

Rotate staff, shorten shifts
Let people know what’s going to happen, and keep coming back to tell them – don’t just tell them once; keep checking in.
Train staff in communication skills. Really explain things.
Provide written information, for example: what is a hold?
Private a private space to discuss legal issues
Everyone agreed that Peer support specialists would be incredibly helpful, especially in the ED (not everyone has a friend or family member, and friends/family can’t be expected to take that role).
If peer support specialists aren’t available, staff should ask patients whether there is someone (friend or family) that could serve as an advocate and guide.
See the whole person, not just the diagnosis

Discharge

Many of the participants described discharge planning and continuity of care as some of the most critical components of their experience. Participants were concerned that “so much psychiatric care is short term,” but what’s really needed is consistent relationships with providers/counselors over time.

All said that they left the hospital with a scheduled follow-up appointment. Many participants described having a follow up appointment, written on a piece of paper, as very helpful – a kind of safety line.

“Providence gave me 5 weeks outpatient treatment and that made a huge difference. I was able to return to work.”
“One place finally gave me continuity of care.”
“After I left the hospital, I knew I had an outpatient appointment for the next day, at the same place. And I’ve been with them long-term, consistently for one year now.”

Not everyone had a smooth transition:

“The social worker couldn’t talk to my family, and you’re told ‘if you don’t have a place to go then you’re not getting out.’” This person complained that his family members couldn’t find him in the hospital because privacy laws prevented the hospital from disclosing that he was a patient.
“My life was totally disrupted. When I got out, people were squatting in my house.”

Recommendations:

Help people set up benefits and get housing
Provide computers so patients can look for resources. “Give us the tools.”
Help get people set up with a bus pass (and an honored citizen card for Trimet)
If paperwork is provided, make sure the person can read.
Create a WRAP plan prior to discharge (Wellness Recovery Action Plan) that includes information on medications, contacts, signs of improvement/warning.
Print out a detailed discharge plan. This is important because a person’s memory is impacted by the crisis/experience.

There was broad support for the following recommendations:

Use peer support specialists for discharge planning.
Create a smooth transition to outpatient care.

Overall Recommendations

Gentleness
Trauma informed care
Patients need a safe place/person to give feedback- we are worried about retaliation or loss of services
Need to feel safe=Choices, not coercion
Healing space
Need for respite care as an alternative to inpatient care
Prevent unnecessary hospitalization. Prevent people from being re-traumatized by the system. (ie: “If it was a safe space, I would have been ok the next day. Instead, I’m still traumatized 3 years later.”)

Disability Rights Oregon March 11, 2015 Focus Group Results Page 1