by Kimberly Spering, MSN, FNP-BC

It was a late winter day when I met “J,” a patient who had already endured so much in her lifetime, and one who made me shudder with the thought of someday meeting the same fate.

“J” had suffered a CVA in 2002, resulting in dysphagia, aspiration, and the placement of a PEG tube for nutritional support. Over the years, she went from being ambulatory to bed-bound for the past three years. “She just stopped walking one day,” I was told. She had expressive aphasia, severe extremity contractures from immobility, and the worst unstageable skin ulcer I’d seen in 26 years of practice.

The unbelievable stench of that wound met me as I walked half-way up the steps of the row home. Let me say, there is very little that makes me nauseous. After all, working in critical care, trauma, and in patients’ homes with less-than-stellar cleanliness, it takes an awful lot to make my stomach turn. I’ve discussed autopsy results and trauma incidents during dinner without batting an eyelash. But my stomach twisted and churned on that day.

I sat on the floor of the tiny, 8-foot square bedroom, because there was no room for a chair, and I was afraid to sit on the bed, which had seen better days and probably had a plethora of bacteria and secretions. Unfortunately, that also meant that I sat by the waste basket which held the soiled wipes and dressings from the wound care change. No matter. I set out to do what we palliative home-based NPs do.

Her left hip wound was unstageable, bleeding, and draining purulent drainage. She would only lie on her left side; the aide and family noted that she grimaced and appeared to silently scream while lying on her right side, so they kept her on the left side, no matter what. We discussed her poor nutritional status, the unlikeliness for the wound to ever heal, and the possibility of signing on to hospice care, which she definitely qualified for. Her daughter wanted to discuss the issues with her siblings. On the follow-up visits, they wished for the patient to remain home and not pursue hospice at that point.

Over the course of three visits, her situation and wound worsened. I had asked for her PCP to order home-based wound care nurse visits to try to help the wound bed as much as possible. Despite multiple phone calls and messages through the EMR, every time I returned, no wound care was ordered.

One day, I opened up my EMR to find a message from nurse who worked with the PCP. “J” has not had a visit in two years; we will not write orders for wound care.”

Um, never mind that the patient was bed-bound and getting her out of bed to a wheelchair was impossible. Never mind that I offered to document the face-to-face visit to demonstrate the need for care. My repeated pleas fell on deaf ears.

I messaged a wound care NP and asked for a “curb-side consult” about treatment, after describing her wound in detail. She was gracious enough to lend her expertise and advice, and the medication was ordered. However, I wanted someone in the home to evaluate the patient and follow-up on her care.

So, as we do when faced with obstacles, I had my staff order the nursing wound care consultation under my collaborating physician. I don’t like to do that, but frankly, I’ll do what needs to be done for the patient’s benefit. Since Medicare does not allow us home-based NPs to order wound care, we sometimes work around the system in a legal fashion.

Fast forward a few weeks. I received a phone call from the clinical manager of the home care agency. “My nurses went out and are appalled at the home situation and gravity of “J’s” wound. Do you think it would be appropriate to admit her to the hospital for evaluation & treatment, then pursue hospice?”

I agreed with this request. She and the nurse made a home visit to the patient & daughter, explaining their concerns about the need for more advanced care and hospice services. The patient was admitted. I facilitated an inpatient palliative consultation with the patient and family. Ultimately, hospice services were initiated, and the patient was transferred home to receive this extra layer of supportive care.

What frustrates me to no end is the lack of continuity of care in this case. The PCP was the one to order our home-based palliative care consultation. My information and notes were shared with him monthly. I sent separate messages and made phone calls to the PCP…without getting any orders.

The biggest hold-up, from what I can tell, was from the clinical staff nurse who looked at her appointment history and decided, on her own, that no orders were to be given. I reviewed all of those notes: the physician was NEVER informed of my phone calls requesting orders; or at least, there was no mention of his notification in the chart. To make matters worse, IMHO, the person making this decision to not provide a consultation was a NURSE. Not an MA or other assistant. But someone who should have clinical decision-making to look at an individual case and decide to take it further with the provider. What was equally as disturbing is that all of my personal emails to her PCP went unheeded.

Yes, there are “rules” about giving orders, refills, etc., for patients who have not been seen recently.

However, c’mon! A bed-bound, frail, 70-pound lady who can’t get into a wheelchair? Can you, say, be an advocate for personalized care?

I’m frustrated at the nurse’s lack of understanding…compassion…whatever you want to call it. I’m frustrated by the “system” who reportedly makes these “rules” about not ordering things if the patient hasn’t been seen. Yes, I get the liability factor. I’m frustrated at the multiple attempts at communication to this PCP – unheeded.

When, if ever, will the health care “system” look at patients individually? I do, every day. I have to. My position necessitates it, because patients will fall “out of the box” frequently. I suspect most of us try to do that. But the “system” obstacles can seem insurmountable.

Ultimately, the patient had to be admitted to secure hospice services and the extra layer of support. How much did that cost?

Look at your own practice. Do you see issues that you can intervene to make a difference? It may not be a severe wound in a bed-bound patient. It may be a barrier that patients face – getting appointments to specialists, ordering DME equipment, coordinating care, ordering necessary medications, etc.

We cannot afford to just follow the “status-quo.” These are patients with multiple, often seemingly-insurmountable problems. Lend your voice to those who need one. Support your patients to get the care that they need and deserve.

If our efforts help even one patient, stuck in the quagmire of medicine “rules,” our patients and our own conscience will thank you for your efforts.

Kim Spering has been a nurse for over 25 years and worked as an NP over the past 15 years in Family Medicine, Women’s Health, Internal Medicine, and now Palliative Medicine. She serves as an editorial board member of Clinician 1 and submit blogs to the website, with a goal of highlighting both the clinician and patient experience in health care.

Disclaimer: The viewpoint expressed in this article is the opinion of the author and is not necessarily the viewpoint of the owners or employees at Healthcare Staffing Innovations, LLC.