Present with the patient were several family members, one of whom asked insightful and technical questions about home and hospice care. After a few minutes, I asked her if she worked in healthcare since she seemed to know so much. She pointed to the iPad in her lap and said, “No, but I have an iPad”.
No, but I have an iPad. We all know technology has become a big part of our lives. As access to the internet increases through the proliferation of devices like smart phones and tablets, more people go online looking for health information. This is particularly the case for those with a recent medical crisis, 65% of whom seek health information online versus the 55% of those not experiencing a crisis (http://pewinternet.org/Reports/2011/Social-Life-of-Health-Info.aspx). However, beyond education about an illness, there is some evidence that people go online because they don’t get the information they need from their healthcare providers. One survey found that people were more likely to go online for information if they felt that their communication with providers was less patient-centered http://www.ncbi.nlm.nih.gov/pubmed/?term=21154093
That leaves those of us who do actually work in healthcare with several opportunities:
- Identify information needs- Clinicians need to determine how much and what patients with serious illness want and need to know. Although people go online for information, they prefer to get it from their healthcare providers.
- Suggest online resources- To supplement the information we provide in person, we need to suggest good online resources for patients and families interested in getting even more information. There are wonderful medical sites available, so you should know the key ones for your area of practice.
- Encourage prepared patients- We need to be open to the fact that some patients and families will come in fully informed and we need to support that. My acknowledgement of this family member’s expertise supported her efforts to help. And, as a result of those efforts, the patient and family knew enough about hospice that we could discuss the specifics of their situation.
So, as we all become more and more dependent on technology, we need to modify our clinical practice accordingly. However, good care will always involve personal interaction. We can’t just leave patients and families to their own devices.
I recently went to a wonderful birthday party. A good friend was celebrating both a milestone birthday and the fact that she is cancer free for over 2 years now. Partying with her and her family reminded me that she’s a great example of a palliative care story with the kind of happy ending we don’t often hear about: the one where the patient recovers and lives.
She had just had twins when she was diagnosed with an aggressive form of lymphoma. She went into remission after standard treatment, but then the lymphoma came back. The prognosis wasn’t encouraging but no one, least of all I, was thinking hospice was the right next step. This was a mother of 3 small children who had every reason to want to try to live. She agreed to a stem cell transplant and was hospitalized for the treatment. While there, she had very bad nausea and was losing weight, something she didn’t need. She was also in both physical and emotional pain. At my suggestion, she asked for a palliative care referral. When her physicians heard that, they were confused because “she wasn’t dying.” She agreed, and told them that she needed help to manage symptoms so that she could tolerate the treatment to help her live. A wonderful palliative care nurse saw her and got her symptoms under control. She also had the chaplain visit and arranged for her to vote by absentee ballot. My friend survived the stem cell transplant and is now chasing her children around and being a wife, mother, and member of her community.
The point of this story is that she’s an example of what we mean when we say that palliative care is appropriate at any stage of an illness and concurrent with curative treatment. Perhaps if we told more stories like hers, where there’s this kind of happy ending, rather than just stories about good deaths, people would be inclined to think of palliative care more favorably and to ask for it sooner. She’s living proof!