On Chemotherapy

My friend had breast cancer twenty years ago. After surgery and radiation, she has been in remission and free of health complaints. Now that she is almost 80 years old, another lump was found in the same breast. She has access to excellent medical care, and she was given the following advice:

While the lump was small, she should have a mastectomy, just in case. As she was not eligible for another round of radiation therapy, it was recommended that she go through chemotherapy, because physiologically, she was deemed to be perhaps ten years younger than her actual age.

This is typical advice to elderly adults who are in good physical shape. It is based on the assumption that adding years to your life trumps every other consideration, provided you are in good health otherwise.

At age 80, how long does the average person have to live? Two years, five years, ten years tops? With all advances in medicine, we have not managed to extend life much beyond that. We are getting more and more people to reach their eighties, but we are not living significantly longer than that.

My friend was struggling with the advice she was given, and what was presented to her as the best medical solution. She did not want to lose her breast, and she did not want to put up with the side effects of chemotherapy. So she tried hard to find second and third opinions to support the view that it was not absolutely necessary to conduct a mastectomy and chemotherapy, and that she was not carelessly jeopardizing her chances of survival by refusing these options.

As we spoke about the different considerations that come into play in these decisions, she kept saying “I will get chemotherapy if I have to, but I’d rather not”. To me, this indicated an obligation that she felt to justify her choices to her friends and family, and perhaps to her medical advisors. Nobody wants to be seen as reckless with regard to one’s own health.

However, isn’t that bizarre and plain wrong? A person’s life is a person’s life, and having a lump in your breast is just one of many things you will consider and care about. So a woman who has carried two breasts through her entire life wants her life to end with both of them in place. So a woman who may have five, six or seven more years to live, probably deteriorating progressively as she ages, does not want to ruin her sense of well-being right now with an aggressive therapy regimen. So what?

Why is she made to feel guilty or irresponsible? Why does she need to justify her course of action?

It is understandable that friends and family of a person in this situation may advocate the more aggressive therapy, as they may fear losing this person. Fair enough.

However, it is my view that medical professionals should state very clearly that the choice is entirely up to the patient, that every choice has its trade-offs and that an informed choice, whatever it is, represents a responsible and acceptable way of managing one’s health. To have this sort of back-up from the medical community would make dealing with a difficult situation easier for the patient.

The Role of Motivation in Patient Engagement

As Dave Chase @chasedave recently stated The most important medical instrument is communication, and Patient Engagement is the Blockbuster ‘drug’ of the century. The idea is that by engaging patients to become more proactively involved in the management of their own health, better outcomes can be achieved, and generally at a lower cost to the healthcare system (compared to expensive tests, procedures and medicines).

New technologies make it easier to engage patients – for example via online portals, health apps, personal electronic health records, portable monitoring devices or a clever combination of these tools within a new care model. Clearly, when the generation of texting, tweeting, vining, instagraming twenty-year olds turns fifty and start their decent into chronic illness, resistance to digital, mobile, sharable health tracking and communications technology will no longer be an issue.

Remains the issue of motivation. The people who continue to supersize their burgers and fries, do they lack awareness of the health impacts of excess weight? The schizophrenic who skips her pill because it makes her head feel fuzzy, has she not been educated on the dangers of messing with her medication regimen? Will improved communication with a healthcare provider convince my uncle to stop smoking?

Yes, there are those who suffer from inertia, who are uncertain about the right way forward or who find it hard to fit taking care of themselves into their busy days. These patients will find it helpful to be supplied with tools and supportive healthcare providers who make it easier for them to look after their own health. These patients are the low-hanging fruit for the new care models.

And then there are other people. People who will not download the app. Who will not sign up for the e-newsletter. Who do not want to be called by their pharmacy to remind them to refill their prescription. Some people will continue to do dangerous, unhealthy things because they want to. It makes them feel good, at least momentarily. Some do not want to face the realities of getting older, of their failing bodies, loss of beauty and loss of agility. Some are comfortable with the thought that this is all inevitable, and do not feel inclined to take action. Some are looking to their doctor for the quick fix, just make it go away, I don’t want to bother with it.

PtEngageUSED

Motivating people is a tricky business and tech tools are only going to do part of the work. What motivates patients to take care of themselves? Pain? The desire to live longer? A feeling of obligation? Because your mom told you to? Peer pressure? Because it is cool? Fun? Because it makes you look better?

Also, doesn’t motivation change over the course of one’s life? What motivates a twenty-five year old to track his weight loss with a health app and what motivates a seventy-year old to continue his androgen deprivation therapy would likely be very different things. Capturing the Show Me The Way segment of patients with new patient engagement tools will be easy and rewarding. Addressing the Maybe Later and the No Way segments will be much tougher, and cracking the motivation nut will be essential to make it work.