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For many of us, the opportunity to journey with others as they face serious illness and the end of life in their own unique way is what drew us to hospice in the first place. Will the need to report the same data on every patient mean that individualized care must go by the wayside? Let’s explore that concern a bit. 

Hospice and Palliative Care Month has arrived. Every November, the National Hospice and Palliative Care Organization coordinates the theme and provides outreach materials for use in educating communities on the valuable services available to them as they navigate their own journey with serious illness and end of life.

Hospice experiences: Meeting You Where You Are

The 2022 theme is Meeting You Where You Are. For many of us, the opportunity to journey with others as they face serious illness and the end of life in their own unique way is what drew us to hospice in the first place. I have been privileged to provide hospice care to the very young and to those who enjoyed a very long life. Each patient and family has touched me in their own unique way and taught me something that I incorporated into my work going forward.

I learned along the way that what I believed was best practice often had to be modified to meet the unique needs and situations encountered when meeting patients where they were. Sometimes that meant adapting to outdoor plumbing or no plumbing at all.

Sometimes it meant helping a patient distinguish between the desire for the taste of beer and the buzz associated with beer consumption. The answer to that question determined whether the beer went down the feeding tube or was a savor and spit process. I had to push against those who wanted the patient to forgo the beer altogether. The patient appreciated my advocacy and once his beer intake wasn’t an issue for staff, his beer consumption dwindled.

I remember caring for a young mother who spent her last weeks sleeping on a mattress in her yard with the sunlight filtered through the forest trees. The warmth of the sun eased her pain and fed her soul. She treasured each day she could nap with her young daughter. I learned to keep a pair of sneakers in my car and a blanket to spread on the ground as I performed my assessment. These adjustments were trivial and again allowed me to meet the patient where she was and offer her support as she journeyed to the end of her life on her own terms.

Is standardizing data the end of individualized care?

Whether you are a hospice clinician or an administrator, you have similar stories and experiences that make you and your organization what they are today. As we begin our second year of new standardized quality measures, you might be wondering how the measures from the hospice quality report program and the coming standardized Hospice Outcomes and Patient Evaluation (HOPE) tool might impact your ability to provide the individualized care that allows you to meet patients where they are.

Will the need to report the same data on every patient mean that individualized care must go by the wayside? Let’s explore that concern a bit.

Standardization supports individualized care

What is the first thing that comes to mind when you read the statement Standardization Supports Individualized Care? Some thoughts might be:

  • Standardization is the opposite of Meeting You Where You Are. 

  • If we treat everyone the same, we won’t have the time/money/resources to do the individualized stuff. 

  • This is another step in medicalizing the dying process. 

  • So often we have such a short time with our patients, why waste it asking questions that don’t matter?

Look at it through a different lens

I’d like you to think about standardization in another way. The hospice quality reporting program looks at the things that matter most to patients and families:

  • How well were pain and other distressing symptoms managed?  

  • How prepared did patients and families feel for what was coming next?  

  • How often did patients seek out care in other settings because their needs were not met at home?

These are all questions that are important to you as an agency as well, and the answers to these questions are unique to each and every patient and family. A standardized assessment tool will prompt staff to ask the questions necessary to create a plan of care that meets the patient and family where they are. Your skill in accomplishing this will be reflected in your patient outcomes and quality scores.

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Nobody wants to be in pain, right?

I’d like to share a story to illustrate this concept. One area where assumptions are often made in terms of patients’ wishes is pain. The patient is asked about their pain level and the clinician documents the current pain level. The patient’s pain goal is either left blank or captured as a desired pain level of “0” because nobody wants to be in pain, right?

Meet Eva. Eva was the matriarch of her family. Sunday dinners involved feeding four generations. Love and laughter filled the home. When Eva got sick, she helped her daughters keep the family dinners going, even when she was too tired or nauseous to eat. Eva shared with me how the sounds of family filled her home and helped her deal with her pain.

Eva was dying of pancreatic cancer. She was experiencing significant pain but refused pain medications. She often reported her pain as a 9 or 10 on a 0 to 10 scale. She chose to rely on praying the rosary and spending time in silence, alone in her room to manage her pain.

Eva’s husband and children shared how hard it was to see Eva in pain, especially when there was something that could help. Eva was unwilling to discuss pain management options, telling me and her family, “nothing is to be done.”

One afternoon I visited with Eva. Her children were out doing errands and Eva’s husband asked if he could run to the post office quickly while I completed my assessment. As soon as Eva’s husband left the house, Eva shared the story behind her refusal of pain medications. She asked that the story remain confidential, stating her family must never know.

She shared how she had been unfaithful in her marriage, and no one knew about it. She stated that her pain was her “punishment for her sins.” I acknowledged Eva’s pain and offered to arrange for a chaplain to visit. Eva refused the chaplain, saying “this is something only a married woman like you could understand.”

I honored Eva’s refusal of the chaplain and the ongoing refusal of pain medications. We discussed together how her family struggled to see her in pain. Eva agreed that I could talk with her family about spiritual pain and the importance of accepting pain and offering the suffering up to heal hurts in the world. Eva knew her family would understand that as a basic tenet of their faith. Again, she reminded me that the reason behind her spiritual pain was to remain confidential and I reassured her that her story would remain safely with me.

Eva’s family still struggled with seeing her in pain, but they expressed understanding of why Eva would make that choice. They developed a plan for family members to take turns praying with Eva when she was open to that and sitting in silence when Eva just wanted quiet.

Eva continued to struggle with pain until she died. Honoring her wishes, she was not medicated. The family expressed sadness at this, but they shared how honoring her wishes brought them a bit of peace.

Just another touching hospice story?

What makes this more than another touching hospice story? How does it illustrate the benefit of standardized assessment tools and quality measures?

Think about it this way. As she neared death, Eva’s pain was a 9 on a 0 to 10 scale. Pulling just that piece of information from her record would show unmanaged pain. However, if the assessment tool asked for current pain level and desired pain level, the documentation would show a pain level of 9 and a desired pain level of 10, reflecting a desire to avoid pain medications at all costs.

The pain management information would then show that the pain was managed to the patient’s desired level. No need to tell the entire story or justify the pain score due to the patient refusing treatment. The data simply reflects the patient’s desire and how well the hospice was able to meet the patient’s goal.

Struggling with visits in the last days of life?

The Centers for Medicare and Medicaid Services (CMS) currently collects claims data showing the percentage of hospice patients who receive in-person visits from a registered nurse or medical social worker on at least two of the last three days of life. Both hospice clinicians and administrators struggle with this quality measure because patients and families often refuse visits during this most precious time.

As a clinician, if I have done my job well, patients and families will know what to expect, how to manage any anticipated symptom, and what to do at time of death. I am happy to visit when families need or want the support but forcing a visit to meet a quality measure is not in the patient or family’s best interest.

How different would this measure look if an offer of a visit was captured, and patient or family refusal of the visit was honored? For CMS to capture this data, it would need to be a standardized item on an assessment form that would transmit to CMS along with the other quality data. This is just another example of how standardization can help support individualized care that allows hospice organizations to meet patients where they are.

When National Hospice and Palliative Care Month comes to a close, let’s all work together to hold onto the heart of hospice, meeting patients and families where they are, while at the same time exploring how the data collected via standardized assessments and quality reporting can help us continue to provide the individualized care that is the hallmark of work we do as we journey with patients and families like Robert.

Meeting you where you are, embracing all that matters to you, represents hospice and palliative care at its best.

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