If I’m Not A Survivor Am I a Loser?

Based on an article in the NYT ‘Life, Interrupted: Am I a Cancer Survivor?‘  I posted the a Tweet and received the following responses which is spurring this post. 

These response made me stop to consider who are the losers and winners in terminal and serious illness? 

In the NYTime article Suleika Jaouad asks the following question ‘What does it mean to be a survivor?’ She further states that, and rightly so, the term “survivor” is as ubiquitous as it is hard to define. Cancer, its diagnosis, treatment, and outcome is as complex as Higgs boson. Cancer is not a binary zero or one, on or off, yes or no. It is a gradient of the disease, the patient, the family, the HCP, the insurance plan, and a dozen other variables. To look at someone with cancer as winner or loser I believe harms those with cancer who choose palliation or hospice. The reality is that there may not have been a choice to go into palliative or hospice care but, to position that decision in relation to being a survivor a winner harms the entire spectrum of terminal illness and especially cancer. 

Let me make a point right now. I am not advocating that those diagnosed with cancer don’t fight like hell. They should do anything and everything to not lose that fight. (You can’t help but use that win lose analogy.) At the same time the American Cancer Society states there will be 1,529,560 new cancer cases and 569,490 deaths from cancer in 2010. The ACS further reports Cancer death rates fell 21.0% among men and 12.3% among women during 1991 to 2006. This could not happen if there were not winners and if people were not committed to survive. Those half million Americans who died fought their disease. Are they losers? And as they were losing their fight did they suffer unnecessarily? Did their loved one witness something that will forever remain etched in their memories? Those of us who have benefited from palliative and hospice care I hope feel as I do, even in my loss, my wife’s ultimate loss, there was a small sense of victory, it was dignity for both of us. As I’ve said and still don’t know where I Bogarted it from ‘Hospice saved my life.’

Robert Wood Johnson Foundation had a post ‘The Path to Palliative Care‘ which documents the December 1995 issue of Time magazine publishing the findings of SUPPORT the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment. Knowing When to Stop which to quote ‘American physicians often ignored the last wishes of dying patients and caused unnecessary anguish and stress’. The post points to the development of a robust palliative care movement in the US. As I’ve posted here before we have come a long way and many of us have benefited from palliative care and hospice but the data is clear there is more to be done. This movement and those who deliver it know how it makes a huge difference to both patient and family. Would they be investing so much and serving so selfishly if was not a winning proposition? 

Further in the Jaouad NYT article she says a friend Tweeted the following ‘I loath the term. It’s either exclusionary or overly broad. So I don’t define it, I avoid it’ The author ends the article by saying she will continue to figure out what surviving is. And that is a great conundrum to face.

Those who know and have experienced palliative or hospice care know it is a hard choice to make and accept. It is hard to travel that path but compared to the alternative it makes everyone a winner. Perhaps those of us who some feel are losers need to let them know we are not.

July 10, 2011

On July 10, 2011 Donna and I had dinner at the Odeon.

The previous week of was a rough one. For much of the year Donna was fighting with HPO (hypertrophic pulmonary osteoarthopathy) a depilating condition of the joints especially in her knees. We spent months trying to resolve it but the bottom line was we had to achieve tumor regression again. So for June Donna was on her third line of chemo, Gemzar. We had a CT earlier in the week and were scheduled to see the oncologist on Friday July 8. He said the chemo wasn’t working and Donna has pleural effusion that should be treated. He scheduled a pleurodesis for Monday July 11. Told us the last place we wanted to be was in the hospital over the first weekend in July. (New residents, interns, and fellow. Think Homer Simpson with a degree)

Dinner on Sunday was low key. The walk home, only two blocks, was difficult. Each step Donna took was painful and slow. She walked like one of Jerry’s kids on a telethon with braces. Stilted halting steps. Each step counted out to avoid getting to where we were going. I wonder how she remained so dignified.

We finally made it home. I believe ‘True Blood’ was on. We watched it and went to sleep. The next day with Donna in even more pain we headed to Beth Isreal. I had to carry her to a wheel chair. Little did either of us realize Sunday July 10, 2011 dinner at the Odeon was our last meal together. The last time we slept together. The the last time she would be home.

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.

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.

NPR and Planet Money: Who Gets a Liver Transplant

NPRs Planet Money has a podcast this week titled ‘How Do You Decide Who Gets Lungs?’ It was an excellent examination of the current system for organ donation and recent changes to that system. An interesting point was made. Pre 2002 liver transplant lists were set by patients in ICU and time in ICU. Those in ICU were at the top and the longer you were in the higher your position on the list. Post 2002 it was changed to a more objective criteria including bilirubin, creatine levels among other clinical data. During the discussion physicians said that once the system changed the number of patients in ICU needing a liver transplant dropped significantly. They admitted that that may indicate gaming of the system. doh? In the new system it is harder to game it since the criteria is clinical and objective. 

Overall this was an excellent podcast on a very critical topic in healthcare. But I feel they missed a point. Transplantation is a huge business for both the institution and the HCP. There is an economic incentive to get the organ in order to do a transplant. I am in no way saying institutions or HCP position economics over patient care. What I am saying is that Planet Money may have missed another point to examine, what are the economics of transplants? But that is not as dramatic as life and death. 

The Office Visit: A Learning Experience?

Digital Tonto’s fourth paradigm shift is ‘From Transactions to Experiences’. This captures the essences of the three previous shifts and I believe has the greatest application in healthcare.

Greg states, previously the brand and the consumer had a one-time value exchange based on feature benefit attributes. Consumers expected x and received x. This mimics the brand (physician) and consumer (patient) historically and in many instances today. The physician offers a value: care and management of your health on an as needed basis. The features are apparent, knowledge, expertise, experience, prescription, etc. The benefits are equally apparent, wellness. It was a simple value exchange. I need a checkup, I saw my HCP, I had a cold, I saw my HCP, I have a chronic illness, I see my HCP. In between these moments of interaction with my HCP there is healthcare inactivity unless there is chronic or terminal illness. Or I am one of the growing numbers of patients who are going online or engaging in social media to improve my healthcare knowledge. Largely this occurs outside the office visit.  

The simple value exchange is morphing before our eyes. Brands are partnering with consumers in order to achieve ‘maximum utility and enjoyment from their purchase’. Brands want to create experiences for consumers. Remember, adult learners and all adults learn from experiences and upon reflection adults will integrate experiences into their lives.

As I’ve stated previously the office visit is not a drive by. It can be the place to begin life long learning. Physicians must engage in life long learning. It seems simple to have patients do the same? There are a huge number of patients engaging in learning about their own a loved ones healthcare. It is where, with little work, a HCP and patient can maximize the effect of simple check-up to the management of chronic illness. The smallest functional environment of learning in healthcare is the patient physician office visit. It does not have to end there. Both physician and patient can change that transaction to an experience and create a learning narrative. Make it a learning experience for both parties.

I will present ways to begin this healthcare learning experience in future posts.

Fighting the Drug War is Killing the Terminally Ill

Is this the lasting impression America has on pain management: it’s a criminal conspiracy?

Here

And those who should know how to treat pain don’t do it very well.

Here

How much of the former is driving the later because it gets the headlines, coverage, and sells? America hates junkies.

I would say we are trying to look taller fighting pain medication drug abuse by standing on the terminally ill. Somehow we need to find a way to do both AND not do one at the expense of the other.

It Just Seems So Obvious

“If the United States and its partners bought all of Afghanistan’s opium, a major source of corruption in Afghanistan would disappear, violence in Taliban-affected areas would fall, world supplies of heroin would crash, and a global shortage of morphine — a source of much hidden suffering — could be alleviated.”

Over 5 billion people worldwide have ‘low to nonexistent access’ to opioid painkillers. As of April 17, 2012 over 1,800 members of the US military have died in Afghanistan. 

Both these statistics are unacceptable. I do not know what it is like to loose a loved one to war. I do know first hand what it is like to it to watch a loved one suffer a death from cancer. If it was not for the brilliant and dedicated professionals at the hospice and their ability and expertise to administer morphine I cannot imagine witnessing her death. 

And that is the problem, those who have the power to make a difference to so many do not know first hand what those who’ve lost a love one to war or to terminal illness and death. Let alone those who are dying. Otherwise these statistics would be fixed.

http://tiny.cc/mzs2cw

Adults, learning, and online: They are connected.

Old news that deserves to be revisited: Pew Research Center ‘The Social Life of Health Information, 2011’ I would venture not much has changed in a year. This is just a sample of the data rich survey and report. 

Of the 74% of adults who use the internet:

  • 80% have looked online
  • 34% have read someone else’s commentary 
  • 25% of internet users, or 19% of adults, have watched an online video about health or medical issues
  • 23% of social network site users, or 11% of adults, have followed their friends’ personal health experiences or updates on the site.

 Adults using online resources are seeking a solution to a problem. Do you know the problem they want to solve as it relates to your brand or service? Do you understand where they are in there learning? What are you doing to ensure your brand or service is presenting a problem-centric message to those seeking solutions? Brand-centric messages do not connect with the deep needs of a someone seeking to learn. It does not connect an adult to you and your brand. And least we not forget social media is not an add on after thought if you are going to include it make sure it is tied to and part of your strategy. 

http://pewinternet.org/Reports/2011/Social-Life-of-Health-Info.aspx