What we need to do to enhance patient quality of life in British Columbia

There is a lot of work to do if we are to further develop a pain and symptom management and palliative care program at BC Cancer that addresses the full scope of patient needs, but with ongoing research and support, we are well on our way.

In order to design such a program we need to have a full understanding of all the sources of potential suffering a patient may face. Most people can receive adequate pain management fairly easily with available interventions, but there are some people who have what we call “tricky” pain – pain that doesn’t respond to typical interventions.

 

Opportunities to improve patient qualify of life

 

These patients require extra care, but much of this has historically been done by the seat of our pants – at least until recently. In order to provide the very best care, we need to understand the risk factors for patients so we can anticipate and prevent symptoms before they occur, or catch them early. We also need to understand how these symptoms are connected with one another, and design a multi-layered approach that can address all symptoms – and potential ones – at once.

For example, there are common but tremendously distressing issues which can be awful for patients, such as constipation. There is very little research going on in the management of constipation and understanding how it affects other aspects of a patient’s treatment and quality of life.

Now, developing a coordinated bowel program may not be sexy, but in terms of impact? It would be significant. I was very pleased to have been able to do three studies on this very issue – two interventional and one on the assessment of constipation in cancer patients.

There are many other forms of suffering that patients experience that their oncologists may not know about. In addition, if the pain or symptom can’t be documented, you can’t address it properly nor can you see if the issue is improving or not.  Consequently, many aren’t able to receive the care that they need. Open communication is vital, as many of these symptoms are self-reported, but oftentimes patients may not know how to address these issues with their oncologists.

 

Developing a multi-layered approach to patient care

 

What we need is to integrate pain and symptom management and palliative care into standard oncology care to ensure these patients’ symptoms aren’t overlooked.

In addition, before we begin to think about addressing specific symptoms, we have to deal with the whole assessment issue and making sure there is a systematic screening routine that will allow us to know how people are suffering that goes beyond simply asking them how they are feeling.

I’ve seen patients tell their oncologists in the morning that they are fine, only to be admitted to the hospital later in the afternoon because they didn’t honestly tell their oncologist about their symptoms because they thought that admitting they were feeling awful would mean the oncologist would withhold their chemotherapy.

A sophisticated screening program will allow us to address any symptoms and pain before they become an issue – and properly when they do.

The patient impact of a comprehensive care program

Let’s say we have a patient who is newly diagnosed with metastatic cancer, having developed spinal cord compression. At the time of his diagnosis, he underwent radiation and started chemotherapy with palliative intent for his cancer. He has difficulty with pain management and needs help with bowel care because he has lost anorectal function.

When he goes home, he requires adaptations to his house and homecare to be arranged. He didn’t have a general practitioner so he needs to be connected to one, and to the home hospice program. He continues to come back for treatment and responds very well, but suffers from neuropathic pain in his back and legs which he really struggles to cope with. He also then all of a sudden, even though he had been told that his cancer wasn’t curable, comes to the realization that he is actually going to die from the disease.

He has no idea how long his treatment will help him. He is 43 and had been planning on getting married soon, hoping he would have kids. But now all of that is thrown into limbo and he needs to decide how he wants to re-plan his life, putting enormous stress on his mental health and relationships.

A comprehensive pain and symptom management and palliative care program, integrated within the oncology unit, in partner with good psychosocial support could have helped to anticipate these problems and address them proactively.

 

Addressing pain management with cannabis

 

Part of our research into creating an integrated supportive care program is uncovering better ways to manage pain. Some of our more recent efforts have explored cannabis as an effective tool in this regard, and we are continuing to explore the ways in which we can integrate it into our care system.

To better understand the benefits of cannabis for cancer treatment, we recently completed a patient survey that explores the prevalence of cannabis usage amongst cancer patients. The survey was responded to by about 800 randomly selected BC Cancer patients and asked about their use of cannabis or knowledge of medical cannabis.

What we’ve uncovered so far is that about a quarter of those polled had taken cannabis in the past, and a quarter were currently taking it in some form. Many of these reported that they were taking it in the hope that it might impact their cancer, even though there is very little scientific evidence for it being helpful for this purpose.

Of those currently taking cannabis, around 65 per cent were taking it for pain control, 40 per cent for nausea, 42 per cent for sleep and 35 per cent for anxiety.

The results are very interesting and will help us with an additional study we are planning to launch on the best ways to use cannabis as a management tool for five major symptoms commonly seen in cancer.

While no pain management tool is 100 per cent effective, given its prevalence among those undergoing treatment, we want to ensure that people receive the proper advice, including when and how to use it, rather than getting it from an unreliable or illegal source.

Next week, I’ll share more on this study and how it will help create a basis for employing cannabis as an effective symptom management tool for patients.

Until then,

Pippa