I often wondered, “What a helpful tool an oximeter would be for patients, families, and myself in the homes at near-end-of-life!” If I was called in the night by a panicky caregiver, but the pulse oximeter readings indicated that oxygen and pulse were normal, I would know the problem was not life-threatening. I could give simple advice over the phone and follow up with a visit the next day. If the oxygen level, previously normal, was dangerously low, I would know to visit immediately.
A pulse oximeter is a tool used in hospitals, mainly in ICUs and Emergency Rooms, to monitor a patient’s pulse and oxygen levels. The device, placed on the tip of the patient’s finger, measures the oxygen levels, the pulse rate and rhythm at the fingertips. These oximeters can be set to alarm when the pulse is irregular, or the rate is above or below what is considered a safe level, alerting the nurses and physicians when the body destabilizes before a major crisis occurs.
Families and patients could use the oxygen and pulse values to help determine the safety of activities during the day. When the oxygen level and pulse were:
When the oxygen started to lower and pulse increased at rest, the family would keep their loved one resting and call the physician or nurse urgently for advice. In the early 2000s, these machines were large and very expensive, so they were not an option for most patients at home.
One day, I visited a young man with muscular dystrophy, cared for at home by his family for many years. Recently he had deteriorated, and the family requested ongoing assessments with palliative care. He had a tracheostomy but required the ventilator only at night. His father asked me to watch his sleeping son while he answered the phone. He had an oximeter applied to his finger, so I monitored the values for a few minutes. His breathing pattern was a profound Cheyne Stokes pattern with a non-breathing phase of about 45 seconds. To my great surprise, consistently, the oxygen saturation increased when he stopped breathing staying steady until the breathing restarted.
Then slowly, over the first few breaths, the oxygen saturation started to decrease, reaching its lowest point at the end of the breathing stage. This pattern happened repeatedly. I had thought the oxygen would start to decrease through the non-breathing phase. This measured oxygen levels demonstrated to me that it was not the oxygen decreasing that initiated the breathing, it was the elevation of the carbon dioxide that was life-threatening. The brainstem sensed the danger and forced the breathing to restart strongly to remove the carbon dioxide.
I thought back to my experience with many patients who lapsed into a Cheyne Stokes breathing pattern. I really could not convince most of the families that their loved one was not on the edge of death when they were in a long non-breathing phase. If I had access to pulse oximeters, I could show the families the evidence of good oxygen levels in the non-breathing phase to calm some of their fears. Still, I could not find a way to obtain an oximeter for all my patients.
A few months later, by chance, I saw an advertisement in a newspaper for a small pulse oximeter powered by AAA batteries. The device was 2” x 1” x 1”. If this machine was reasonably accurate, it could be what I was looking for to help families and myself identify impending profound changes and address the issues before a major crisis. The next day, I contacted a respiratory technician who had frequently worked with my patients, and I asked him to research the cost and availability of this smaller oximeter. Within a few days, he presented me with a free sample. The plan was that I would use the oximeter on my patients, record the findings and determine if such an instrument would be a helpful tool to help us in their care. Unfortunately, he told me the cost of this tiny machine was $400. Suitable for my use, but not for most patients.
I did ‘hope’ this tiny machine would prove very useful at near-end-of-life for many reasons, but I had doubts of its usefulness.
Measuring the Heart Rate: As patients progressed toward death, and the heart weakened, less blood flowed to the limbs. This machine relied on blood flowing through the tiny blood vessels of the finger. To maximize the flow of blood to the patient’s fingers, I tried warming the hand, keeping it in a position below the level of the heart. To my surprise, it did provide me with reasonably accurate information closer to death than I expected.
Accuracy: How could I calibrate this instrument? I simply used ‘my’ finger to determine the accuracy before measuring the patient’s signs.
As well, many of the family members were intrigued with the measurements and loved to try them on themselves.
Numbers Over Symptoms:
My colleagues often warned me that giving this instrument to patients and families would have them fixate on the numbers and they would call more often – not about the symptoms but about the numbers. I believed the patient and family would fixate on the oximeter or never use it. Still, I hoped the majority would use the tool before going on an excursion, taking a bath, etc., to determine if it was safe to do the activity or to determine if they needed to add supplemental oxygen during the activity.
Conclusions:
These concerns did not matter anyway because the cost was so high. Most families could not afford to buy them. However, what surprised me was how often I started to use the oximeter. It became a valuable instrument – better than a blood pressure cuff! I was aware of its limitations and used my other observations if the machine appeared to be inaccurate. Also, families and patients loved the device. They eagerly anticipated the measurement at each visit. It gave them some way to understand their subjective observations by observing the objective evidence.
Another six months passed. My experience with the oximeter continued to prove to me that it was a valuable tool. My next ‘awakening’ occurred when I visited a new patient, a retired university professor, recently diagnosed with ALS. After introductions, he directed the conversation and I listened. He stated he had researched my work and knew I was the right person for his care. He admitted the referral was early, but he reassured me that he would not bother me frequently. Since his diagnosis, he had researched ALS and was aware of the trajectory. He needed my help to stay at home until he died. His wife agreed to his plan for care at home.
He outlined for me the likely progression of his disease. First, the physical limitations of ambulation would worsen. He demonstrated to me that he had already set up a mobile chair attached to a ceiling transfer apparatus that allowed him to move from his bed to the computer and the commode independently.
He knew he would likely have breathing issues. He had already decided against internal or external breathing assistance. But he felt he needed scientific evidence of his progression so that he would know when to call me. He demonstrated on the computer what he had set up and the instrument he had used to record his oxygen saturation daily.
He had purchased a finger pulse oximeter that could be hooked up to his computer to download the daily record of his oxygenation in graphic form. He said, “See, this is my oxygen saturation over the last month – all above 90%.” He closed the interview by saying, “I am sure I do not need your help yet. Thank you for coming and agreeing to be my physician. My wife will call you when I need your help.”
Before I left, I asked about his oximeter, “Where did you purchase this pulse oximeter and how much did it cost?” He answered, “I searched on the internet and found a website which listed nine different instruments. I chose the model that best suited my needs.” He put the website on his computer screen. All the oximeters on the site were in the price range of the one I had been given, but every item on the site was on sale with an average price of $30. When I arrived home, I went to the site and bought the oximeter I thought would be the most useful for my patients.
Over the next few years, I distributed oximeters to all my patients and families who wanted them when they started to demonstrate signs of progression toward death. The families would return them to me after their loved one died. I explained to each family the science of the oximeter in terms they could easily understand, the significance of the readings, and what to do if they observed a change in the readings.
When I started this practice I did not believe that a community near-end-of-life practice was sustainable. Throughout my 14 years of providing community care through the CPCN practice, my patients continued to teach me every day.
They proved me wrong. And they had told me so right from the beginning.
I thought I had learned the ideal communication techniques.
They proved me wrong. They grounded me in the reality of communication unique for each person and demonstrated to me that it was more effective.
I could only see the barriers to Near-End-Of-Life Care in the community.
They demonstrated to me that by working together and learning together, we could expand the boundaries of care in the community.
I knew, intuitively, there were differences in the progression towards the death of patients with cancers and non-cancer diagnoses.
They taught me what these differences were and that I needed to adapt my criteria of when to accept patients for palliative care.
I did not believe parents could take their dying children at home until their death.
Both parents and children taught me that I was very wrong! They just needed a little help and a constant link. They did the rest!
Through the years, the patients, families, parents, and children asked the difficult questions, “How long?” and “What will the process be like?” They implored me to teach them about the science of what was happening so they could participate fully in their own decisions about their lives. Together we learned the science! We:
They taught me HUMILITY! They helped me become a more effective physician!
