Palliative Care and the Hospice: A Gift for the Living

This is going to be largely an opinion post as a follow-up to the previous one about palliation. Clearly palliation has a place and it works just as hospice and EOL care does. This cannot be disputed. And there are benefits for both patient and caregiver when this care is implemented. 

Yesterday during a group session we were talking about palliation and pain management. We were discussing that at times in either nursing homes, at home, or hospitals patients with terminal illness may not be receiving proper pain management. A person familiar with that commented that there are cases that we’ve all seen, where the patient is in abject agony and they are waiting for their next administration of pain meds, which comes but never gets ahead of the pain. Or the family feels that having the patient overly sedated is not fair to them. And there is always the fact the attending may not be up to speed on pain management etc. These are all problems that can be solved with education learning etc. We have to work toward fixing these issues. 

What struck me was how my experience with Donna and her time in hospice etc. was different from some others that I’ve spoken with. Make no mistake about it hospice is horrific for everyone involved. It is not the Four Seasons but it meets a critical need. It serves a purpose and achieves its goal for the patient and the family/caregiver.

Psychosocial adjustment that raises patient quality of life is also dependent on the relief of burdens and the strengthening of important relationships prior to death (Singer et al. 1999). Patients often have great concern that they are being a burden to their family and their caregivers (Steinhauser ct al. 2000a). Improving communication between patient and family and patient and healthcare professionals could do much to relieve the burden that terminal illness may bring and strengthen the relationships that arc necessary to raise the level of quality of life at the end of life. Raising quality of 11% and quality of death maximizes the patient’s opportunity to experience a good death.” 

Beyond the patient’s care and comfort we must consider those left behind. Those who carry the burden of watching and caring for a loved one during illness and at end of life. The time following a passing is as important as the time spend in health. It should be spent in positive memories during healthier times. Time following a death should be spent sorting out what was and wasn’t in the relationship and how to create a tapestry of that love that will stay with us for our lifetime. 

I know for me with the positive experience I had with palliation and hospice it still took me months not to have the images in my head of Donna wasting in hospice. But they have been largely replaced by our life together. This begs the question, for those loved ones left behind who may not have benefited from palliative care or hospice, what are their lasting images and impressions? Do they question why they were not offered palliative care or offered it late or choose not to implement it? Do they spend their time post death sorting out what happened in the last few weeks and not what they had during a lifetime? Are those family members and caregivers, who did not benefit from palliation, do they have higher rates of depression? Do they suffer greater incidence of complicated grief when compared to caregivers who were part of a palliative care process?

Palliative care is a gift. It is a gift from the healthcare community and the person who passed away. It is a gift for both the living and the dying.

Best Buy and WebMD: Sharing a Reality

Scott a good and dear friend made an off the cuff comment that was like a song that says it all. 

We were speaking about online health sites and I mentioned WebMD. Without skipping a beat Scott said WebMD is the Best Buy of online healthcare information. I couldn’t agree more. I’ve been hocking for a year or more that it’s not WebMD but MyMD. That is where real healthcare learning should take place, at the intersection of patient and physician, the smallest discreet healthcare environment of learning.
Best Buys positions itself as the all knowing customer centric resource for technology. And they can charge more because they are all knowing. Best Buy doesn’t really get that their customers were bright, tech savy, and can smell higher priced products. Best Buy is the place to go to test drive products and buy elsewhere. How tech savy are you when you have a huge inventory of CDs and DVDs. When was the last time you bought a CD? The Best Buy Logo is 20+ years old. Best Buy is fading before our eyes. It is a relic of a different time. Even buying Napster was two years to late. The tech consumer is learning, changing, and adapting as fast as an upload to Dropbox or Sugarsync or iCloud. And this knowledge is being used daily.
Are healthcare consumers moving as fast with their knowledge uptake as the technorati? Yes and no. Consumers/patients are doing more research online and using social media to improve their healthcare knowledge. That fact is clear. The HCP may be part of the problem but, that will change because there is a critical mass of smart health savvy consumers happening. As consumers/patients improve their knowledge (remember a medical degree and residency doesn’t happen in a year or two) they will begin to see through WebMD. WebMD will become a resource like Wikipedia but not that source where they uptake knowledge, reflect on it and apply it. WebMD will become a minor visit to underpin learning. And let us not forget the consumer sees that WebMD exists for the single purpose of mass marketing readership on placed press releases and articles to gather ad click throughs. 
As Best Buy goes so will WebMD.  Consumers/patients want to be part of a care team, a learning team. They do not want to interact with a thing controlling the distribution of learning. They want share in discovery and change. But the HCP needs to begin to take charge of learning. They are trusted, respected, and have the knowledge. 


Fear and Loathing During the Office Visit: An Opportunity

Today the NY Times had a short article in the Well Section “Afraid to Speak Up at the Doctors Office” It was a summary of a longer (behind a paywall–grrrrrr) article in Health Affairs “Authoritarian Physicians And Patients’ Fear Of Being Labeled ‘Difficult’ Among Key Obstacles To Shared Decision Making
Three points struck me as I read the article in the Times and the abstract. First, shared decision making is key in collaborative medicine where the patient participates in their treatment and care as an HCP partner. One of the best examples of how SDM works and what it can do is The Ottawa Decision Support Network. Using SDM to it fullest potential with all the features and benefits is not a simple task for the busy practice. Second, the fact that patients have these questions and concerns and want to engage demonstrates that adult learning is at work. Patients want to find solutions to problems they have. They want to be active learners but are held back by …”patients feel compelled to conform to socially sanctioned roles and defer to physicians during clinical consultations; that physicians can be authoritarian..” And finally there exists a huge opportunity for both HCP and patients to create ‘productive inquiry’ that can improve outcomes and how care delivered and its effect.

From the abstract the authors argue that the HCP may not be aware that patients are holding back or are afraid to engage in learning. This is a perfect opportunity for the HCP to manage patient care from a place of partnership and not top down. I wrote a post  “Changing the Office Visit from a Transaction to a Value Experience“. My failure in that post was to assume the HCP was ready to engage. Based on this study it seems the HCP is clueless to this need and opportunity. Nature hates a vacuum and this one needs to be filled.

From my view I would try to demonstrate that engaging with the patient in productive inquiry has benefits not just of warm fuzzy feelings but of improvements in outcomes. And we all know that outcomes is the new black in healthcare for both institutions and individual practices. The key is to not have the HCP try this with an entire practice but do his own small two arm study. Look at patients sharing a common illness or healthcare need, identify those who are seeking solutions to problems they want to solve, and divide them in half. With one group actively participate in their learning. With the other, treat and manage as usual. In six months do a chart audit to determine their clinical outcomes. But also measure the patients knowledge and understanding of their illness and how they are approaching and self managing. I would present that the clinical outcome should equal the social outcome of the patient as an active participant with the HCP in the management of their health.