The presence of personal photos or other items from home can make the hospital setting a more comforting one for patients. This can be particularly helpful for patients with long, unexpected hospital stays, such those patients critically ill in a ICU setting. And for elderly patients, bringing familiar items to the unfamiliar hospital, may help fend off delirium– a cause of significant morbidity in already frail patients.
I think there’s another, equally important audience for these types of personal effects and photographs: the providers and hospital staff caring for the patient.
a Patient
Ms MJ, 22 yrs old, has a gradually progressive neuromuscular disease. Diagnosed as a child, she has had more than her fair share of hospitalizations over the past 10 years. She has a tracheostomy because she requires a ventilator to help her breath when she sleeps. She receives most of her nutrition via gastrostomy feeding tube because she can only swallow small amounts of pureed food, insufficient to meet her needs. And with limited use of her arms and legs, she requires a customized motorized wheelchair to get around.
While her physical disabilities are significant, her cognitive function is intact.
About 3 years ago, MJ moved into a nursing facility(snf) because her elderly parents were no longer able to physically provide the support she required. This was a very difficult decision. Despite living apart, her parents continue to spend much of the day with her, every day.
MJ had been hospitalized for more than a month when I was asked to see her. She was admitted with appendicitis and underwent a seemingly routine appendectomy. But her postoperative course was complicated. First a wound infection, then a urinary tract infection with a resistant organism, and now she has pneumonia. MJ has required the ventilator 24hrs/day since her operation, so she has been in the ICU, bedbound for most of the past month. While she seems to be slowly responding to her newest course of iv antibiotics, MJ is now severely deconditioned and her prognosis remains guarded.
Walking by her drab room, one sees a very debilitated young women, attached to the breathing machine, with multiple iv’s and multiple monitors. Between all of these devices, her frail condition on top of her longstanding physical limitations, her ability to communicate with staff is challenging. Everyone in the ICU wants palliative medicine to talk with her family- because they wonder about the utility of this prolonged hospitalization for someone ‘in her condition’.
our Meeting
MJ’s parents have dedicated their lives to their daughter. The knowledge that due to her neurodegenerative condition, her lifespan will be limited is a constant heartache. They are quite spiritual and their belief that all life is precious brings them great strength. The decision to place MJ in a nursing home was the hardest thing they ever did, and no matter what, they visit her for hours, every day. Over the years, as she has faced new health challenges, they have had honest discussions with her. When asked if she’s had enough, her response has always been and continues to be an emphatic “no!”.
I asked them about MJ and her life prior to this hospitalization. Her father answered without words- he pulled out his cell phone and showed me a photo and then a video of his daughter. There was MJ, sitting up in her very fancy wheelchair, smiling brightly in the photo- almost unrecognizable as the women in the ICU. In the video, she is zipping around the snf in her wheelchair with an enthusiastic staff watching. And this video was not taken months or years ago- it was taken just a few days prior to her hospitalization.
This is the MJ her parents see when they visit every day.
But it’s not how the staff views MJ.
Maintaining one’s humanity
While this may sound obvious, people can look pretty awful when hospitalized. Aside from the fact that they are sick, the hospital garb, the lighting, the typical room ambience, etc…, are not flattering(to say the least). Walking the halls of the hospital, I’ve passed by many a room and seen a frail looking patient, lying quietly, flat on their back in bed, cheeks sunken in, and I think to myself “that person looks to be near death”. And when I walked by again later on, that same patient is now sitting up awake and alert- and quite alive. It turns out they were merely asleep!
And ICU patients look even worse. They are often edematous, have multiple tubes coming out of their mouth and nose, surrounded by machines, with beeping monitors, and they really can look like they are at ‘death’s door’, even when they are not.
So just being in the hospital, let alone being ill can make patients seem less vital, less human. And I think this can create an emotional barrier between providers and patients.
Particularly for patients in an ICU setting, this unseen barrier may be a necessary defense to allow providers to perform what can be painful treatments (blood drawing, iv starts, dressings, respiratory treatments, operations, etc…) necessary to help patients recover. But at the same time, this barrier can prevent an important connection between provider and patient, and the patient’s humanity unintentionally gets obscured.
a personal touch can help
Adding a personal touch, with photographs and personal items places the patient in a different context. These items remind providers that their patient is multidimensional and that there are other sides to them that providers have never experienced. Sides that their family knows intimately, and hold in their heart, no matter how critically ill the patient may be.
Especially in situations where providers are questioning the utility of ongoing treatments, this is a vital connection, which can promote empathy and understanding of why the patient/their families are fighting so hard to recover.
I don’t know of any data to support my ‘musing’, but I’ve seen over and over again how personal items can really make a difference. And when MJ’s parents shared their video with the ICU staff, there was a noticeable shift in her providers. Not that they hadn’t been providing excellent care previously, but there now seemed to be more of a connection between the staff and MJ and her family. They now better appreciated why her parents were fighting so hard for their daughter.
…..and this benefited everyone: providers, MJ and her family alike.
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