Tuesday, November 17, 2015
by Beth Fahlberg, PhD, RN, CHPN
My reflections in the article below are offered to teach and to promote better care. They are not intended as criticism. Instead, this message is offered to carry out my brother’s legacy, telling others about his experiences, so that care for others can be improved. Chris wanted to teach those caring for him to understand him as an individual with very complex and unique needs and a highly developed self-management plan to stay as healthy as possible. For years, he lived on a tightrope of clinical stability that could be thrown off kilter with any little change. I’m thankful for the support and care we received, and for the difference our palliative care team made in his last days.
In the last 6 months, since losing my brother Chris at age 47, I’ve been grieving. My grief has been more prolonged and intense than any other loss, not only because he is no longer with us, but because I continue to relive the terrifying times when he could not breathe. These episodes were particularly intense when he was hospitalized, and especially in the weeks, days and hours before his death.
In the hospital, he couldn’t just take an inhaler, a nebulizer, and an anti-anxiety med, like he would do at home. I wasn’t allowed to turn up his oxygen, or to give him his morphine, like I would do if we were at home. Instead, our well-honed symptom management plan was disrupted as soon as he was admitted. And ironically, this is where he needed his symptom management plan the most, when his heart and lung problems were at their worst.
- Yet I was scolded for turning up his oxygen, even though I’m a nurse, and had been doing this for him at home for years.
- When he requested a nebulizer, it often took 20-30 minutes. The nurse had to page respiratory therapy (RT) to administer it-nurses were not allowed to administer nebulizers on that pulmonary intermediate care floor.
- I had to advocate for him with numerous staff so he could even keep an albuterol inhaler at his bedside.
The impact of symptom distress
How many times did he call me from the hospital during those two weeks, telling me “they’re not listening to me!”, his ongoing anxiety triggered by anything that was out of his normal routine for coping with his symptoms. How many times over the years of many hospitalizations did I get out of bed, and drive to the hospital late at night because he was distressed that they were doing things to him that he didn’t understand, or that he believed would exacerbate his symptoms?
- These episodes caused tremendous anxiety and distress for both him and for me throughout his last years, and especially during his final days and hours.
- These experiences had a detrimental impact on our satisfaction with his care.
- These memories continue to trigger my grief.
The importance of patient and family control over symptoms
Every time he was admitted, Chris felt like control over managing his symptoms was the purview of everyone EXCEPT him. He became dependent on the nurse, the physician, the respiratory therapist, the pharmacist, and many others, as well as “the system”. He was afraid to say anything critical about this because he knew that he was dependent on them for everything. Losing control over symptom management in the hospital is anxiety-producing in normal circumstances and terrifying during a symptom exacerbation, especially when you feel like you can’t breathe. And so I live with regret, having been unable to adequately protect and defend my little brother from the terror of feeling like he was suffocating during his final days and hours.
Rapid time-to-treatment: A new focus for quality symptom management?
In Hospice and Palliative Care, symptom exacerbation or distress should be an emergency. But is it treated as such?
In the midst of my brother’s last hospitalization, frustrated and angry in seeing him suffer time and again, I wondered “Why isn’t symptom distress treated as a true emergency?” I began looking at this issue through the lens of my background in cardiology.
Ischemia is an emergency in cardiovascular care. Time to treatment has been used as a standard for quality care in cardiovascular emergencies, for over 20 years. As a cardiac clinical nurse specialist from 1996-8, I remember collecting data about door-to-drug times at my institution so we could minimize the time between patient presentation with acute myocardial infarction (MI), and treatment with tPa. This time-to-treatment focus continues to be used in to promote quality care in cardiovascular emergencies, now including stroke. This scrutiny of time intervals in the systems of care has been effective in identifying causes of treatment delay. It has provided data to streamline systems so they work quickly and effectively in cardiovascular emergencies.
If symptom distress is a priority in Hospice and Palliative Medicine, could this cardiac quality improvement method be used to streamline symptom treatment? Could symptom symptom distress be viewed as a critical incident, in which time intervals between each step in the system are recorded, from the patient/ family symptom report until the symptom is controlled?
Prioritizing rapid symptom relief
Rapid relief of symptom exacerbation and distress in the dying patient (or anyone with advanced illness, especially during hospitalization) is essential to quality care, yet it is rarely being treated as a priority. If it were, our care approaches and quality indicators would be different.
- We would give the patient and family more control over their symptoms in all settings, facilitating their use of personalized symptom management strategies in all settings.
- We would consistently order individualized multi-component rapid symptom relief plans, based on what they know works for the individual, and carried over from one hospitalization to the next.
- We would not abandon patients and family members in distress. Instead, someone would be present to provide support and non-pharmacologic symptom management strategies while others are getting meds and new orders.
- We would employ interdisciplinary comfort and support-focused rapid-response teams for symptom distress episodes lasting over a few minutes.
- We would do rapid-cycle improvement projects to reduce time from symptom report to relief.
Join in the conversation on the #HPM tweetchat this Wednesday, November 18, 2015 at 9 pm EST, when we discuss the following questions:
Topic 1: What is the immediate impact of poorly controlled symptom distress on the person who is dying and their loved ones, both immediately and long-term?
Topic 2: How do you promote rapid alleviation of symptom exacerbation and distress?
Topic 3: What guidelines and policies are needed to promote rapid time-to-treatment and patient-family control during symptom distress episodes, especially in acute care?
What: #hpm chat on Twitter
When: Wed 11/18/2015 - 9p ET/ 6p PT
Host: Beth Fahlberg, PhD, RN, CHPN @BethFahlberg
Beth Fahlberg is a nurse educator, clinician and researcher with clinical experience in a variety of settings including hospital, clinic and home. She began teaching nursing in Seattle in 1995, and is now developing interprofessional continuing education programs on aging, supportive and palliative care in the Division of Continuing Studies.at the University of Wisconsin-Madison. Her greatest passion in teaching is giving voice to the patient and seeing her students develop as compassionate, skilled clinicians, who embody the pallaitve care philosophies, principles and practices she has taught them. Her personal and professional lives have often overlapped, and she uses her experience to convey what’s important to patients and families in her writing. She writes a bi-monthly column on issues in palliative and end-of-life care in Nursing 2015.
You can access the transcripts and analytics of #hpm chats through @Symplur.