Post 103: Pain Management by a Palliative Care Specialist - Six Factors They Consider

When someone without major health issues feels stomach discomfort or an ache in their hip, likely they would continue with their daily activities, only briefly wondering about the discomfort.  “Was it the green curry last night?” or “Maybe I slept funny.”  

We generally assume that this discomfort will dissipate within the next day or so, and we trust that our body will remain dependably functioning.

If the pain were severe or persistent, we may see our primary care physician or even go to the Emergency Room with the expectation that a specific cause would be found (such as a stomach ulcer or a hip bursitis), and that the cause would be addressed, the pain would go away, and we would resume our previous day to day life.

A person living with chronic pain will likely have come to terms with living their day to day life with “tolerable discomfort.”  They likely have undergone tests or seen specialists to determine the cause, attempted various medications and possibly alternative therapies (such as and not limited to yoga, physical therapy, chiropractics, cognitive behavioral therapy, and guided imagery), possibly attempted procedures such as injections and nerve blocks, and have become familiar with their chronic pain.  If mild and/or intermittent, one may have adapted to living with this.  If severe or prone to severe flare ups, they may be familiar with a pain specialist who performs procedures and/or prescribes opioids.

If the primary care physician, disease specialist such as the oncologist, and pain specialist have potential treatments to offer for pain management, how might pain management by a palliative care specialist differ?

The type of patient who might benefit best from seeing “yet another specialist” – that is, the palliative care specialist – would likely be the patient with difficult to control symptoms affecting their day to day quality of life with an underlying (possibly worsening) serious health condition that is likely limiting their prognosis to months, rather than years [read Post 67: The Difference Between "Potential" and "Likely", Post 95: Statistics is Not Prognosis, and Post 100: The Other Half of the Doctor's Conversation (that Often Does Not Occur)]. 

The following are steps or perspectives a palliative care specialist might consider to manage this patient’s discomfort and suffering:

1.  As per standard of care, new or newly worsened pain would be evaluated to determine cause, especially for a “fixable” cause. 

“My doctors thought my horrible back pain was maybe due to the pancreatic cancer, but after asking a lot of questions, the palliative care doctor said the back pain was actually due to a fracture in a bone in my spine! She said they sometimes see it with osteoporosis. So she had me take tylenol around the clock and do physical therapy.  That really helped!  I was finally able to get out of bed without excruciating pain.”

2.  If pain had been previously controlled with the current pain medications, the new or newly worsened pain could indicate potentially worsened disease.

“I know it’s strange for me to say, but it’s such a relief to hear about that new mass in my pelvis.  No one told me the last two hospitalizations what the scans showed.  They kept telling me to follow up with my oncologist, but I don't have an appointment with him until next week. I’m glad you told me so I know now that this pain isn’t all made up in my head, that there’s a reason behind it.”

3.   Sometimes the fear that a new pain or pain flare up could mean something scary, such as “cancer coming back,” can heighten the sensation of pain.

“All weekend I was worried this pain in my back meant the cancer treatment may not be working.  I tried to keep my mind off of it, but I kept worrying and worrying about it.  I feel like my pain level dropped five levels now that I know it’s a kidney stone!”

4.  Though non-opioid medications and procedures are highly utilized, opioids are also an essential and commonly used tool in the palliative care specialist’s toolbox, especially when caring for patients with worsening distressing symptoms due to worsening underlying disease (read Post 31: Three Common Misconceptions about Opioid "Pain Pills").

“The palliative care doctor explained it like this, that when someone’s congestive heart failure or lung disease becomes end stage to the point that they feel short of breath - even when they're hardly moving! - they talk about adding low doses of an opioid pain medication to help with that sensation of not being able to catch your breath."

"The palliative care doctor said that cancer pain to the bone can sometimes become a lot, to the point that the oncologist or primary care physician says, ‘I don’t feel comfortable increasing the pain meds.  You’re already taking high doses.' She said they would then probably refer to the palliative care specialist, who would feel comfortable working with higher doses of opioids or even rotating to other pain medications like methadone.”

5.  Sometimes suffering is more than physical in nature; it is also existential, spiritual, and/or emotional, which could be reported as physical pain (read Post 86: How Has Your Physical Health Affected Your Spiritual Health?).  This is when the palliative care medical specialist (physician, nurse practitioner, or physician assistant) would lean heavily on their teammates, such as the palliative care chaplain and/or social worker and/or counselor (if available), for assistance in addressing suffering in all its domains.

“What’s the point of me if I can’t even provide for my family?!  I deserve to suffer.”

6.  There may come a point for some people where the opioid dose to achieve adequate pain control is so high that they will feel drowsy as a side effect, at which point how to proceed is dependent on their values at the time.

“The palliative care doctor asked my sister a question that didn't even occur to me. She said they always try to use the lowest dose of opioids to get good pain control so the patient can maintain as much alertness as possible.  But sometimes, so much opioid medication is needed for pain control, especially when someone is end stage, that the amount needed might cause drowsiness as a side effect.  So when she asked my sister, 'Do you prefer to maintain alertness even if it meant some discomfort or would you want pain aggressively controlled even if it meant being a bit sleepy?' and my sister said, 'The second one,' it came as a shock to me...but then I knew what my sister wanted.”

Realistically speaking, there is a scarcity of palliative care specialists in many parts of the United States, and patients often rely on their primary care physicians, disease specialists, and pain specialists to help with relieving pain and other uncomfortable symptoms. If/when they decide hospice is the right treatment path for them, the hospice medical experts take over for pain management (read Post 56: Debunking Common Myths about Hospice - Part 1 of 2 and Post 57: Debunking Common Myths about Hospice - Part 2 of 2). 

(There is greater availability of palliative care specialists working in hospitals, for which they could assist with getting pain flare ups under control when someone is admitted into the hospital.) 

I hope this blog provides some clarity regarding when and how a palliative care specialist could be helpful in managing distressing symptoms.