Monday, November 17, 2014

Surgery, Family and Post-Operative Care

In the eyes of parents, children are always children, even when they are grown.  So when our youngest son, 20 years old and a junior in college, needed sinus surgery, my wife and I drove the 7 hours to see him through the surgery and take care of him.  That is what parents and families do.  As a physician and as someone who routinely searches for best physicians and facilities as part of my job, I had investigated the surgeon and the facility and had decided that he should have his care in the city where he goes to school. 

The surgeon was perfect.  Caring, skilled and communicative.  The facility and the health system was excellent.  The surgery was less straightforward than we had hoped, as his obstructed sinus was profoundly infected with abscess formation.  The skill of the surgeon and the operating team was a blessing as operating on infected tissue is always more difficult.  Thus the one hour surgery turned out to take three hours.  Our son came out of surgery and after a few hours in the recovery room and in the extended care area, we took him back to our hotel, as we thought we could better care for him post-operatively there than in his student apartment. 

We walked him into the hotel, supporting him on either side.  He was shaky on his feet as one would expect after hours of anesthesia.  He had been intubated (had a breathing tube inserted into his trachea) during the surgery so his throat was sore and his voice very weak.  No surprise there.  In the hotel room, we were busy changing the dressing under his nose (a so-called “moustache” dressing) which was catching the bloody discharge from his nose, and also helping him deal with some difficulty with urination, also no surprise after anesthesia and surgery.  We were helping him stay on top of his proper pain medication dosage and anti-nausea medication.  We gave him the antibiotics he needed at the proper time intervals.  And then it hit us.  My wife and I are doctors.  We are used to these issues and feel very well equipped to provide post op care and post op monitoring.  But what if we had no background in medicine?  What if we were accountants or store clerks, or engineers or bus drivers who suddenly had to be thrust into this role?  Would we feel as confident and comfortable?  What if the patient had no one to help them, with a friend driving them home and then leaving them alone for the rest of the evening, night and days to recover?

We were keeping him hydrated, pushing fluids.  We were watching him to make sure the bloody discharge did not suddenly turn into bleeding that would be much more serious – even potentially life threatening.  We suddenly understood emotionally the truth of the adage that people in our modern era were discharged from hospitals “quicker and sicker”.  We intellectually knew that people, who had day surgery, were sent home from the hospital often in need of care, even if they were not in need of hospitalization.  The norm today is for that care and monitoring to be provided by family and friends with little training and support in those often critical first 12 to 48 hours after surgery.  Rarely do medical facilities, no matter how good, review the adequacy of that caregiver as they discharge the post-operative patient to home.  

The facility where he had the surgery had done everything in a world class way.  The instructions given to us upon discharge were thorough and clear.  The surgeon had given us good explanations and instructions and had personally called our son the first day post operatively to check on how he was feeling.  Everything was done the way it is supposed to be done.  The problem from our prospective – from a family prospective – is the profound emphasis on efficiency by the rules of the payment systems and the minimizing of the human element of families caring for loved ones. 
Thorough instructions do not take the place of experience and training.  The care of someone with dressings, with pain management, and with all of the issues related to bodily functions are no longer seen as being efficient when done in the hospital.  Those activities do not reach the level of care that meets criteria for skilled home care.  But at the same time, patient and family fears and uncertainties are not taken into consideration.  The risk of being alone is not addressed.  Instead, the families are forced to take on roles for which they have no training and no skills.  Patients are believed to have the ability to monitor themselves.  It is believed that providing reassurance around wound drainage, expected post-operative pain, and family’s worries that the healing process may not be progressing as normal, is just not efficient. 

My belief is that from a cost point of view, this responsibility given to patients and families leads to unnecessary ER visits and unnecessary readmissions as the caregivers often do not know how to deal with a loved one, having just gone under the knife, who complains of pain and other symptoms.  Even though on paper, criteria may make sense, when they don’t take into account the experience, knowledge, and fears of the family caregivers or the lack of any caregivers, they are not adequate and can lead to poor clinical outcomes and ironically higher cost.

Our son is now doing fine, and I feel great gratitude and admiration for the surgeon and his team.  On a broader scale, I worry about whether our push for efficiency in health care has actually hurt our quality of care and paradoxically increased costs.  I worry that we may be minimizing the caring, understanding and empathy that are necessary components of health care.  I worry that we may not be paying enough attention to the informal and untrained and unpaid caregivers who now must do so much of the monitoring and care.  I worry that even as we improve the quality of care inside facilities; we ignore the fact that patients go home and are still sick and need care and monitoring.  I hope and pray that we find ways to address my worries in an increasingly population based medical care system.  

Monday, November 10, 2014

Biology and Culture in the Treatment of Ebola

We are starting to make progress against Ebola.  But those who believe it is because we have developed new treatments or vaccines, would be wrong.  We are still struggling to find the right treatments, and still doing research on an accelerated time table to try and find vaccines for this rapidly mutating virus.  Rather, we are making progress because we are fighting the disease using basic principles of public health while paying closer attention to the cultural aspects involved in both the spread and the control of the disease.  In a study done in “Emerging Infectious Disease” in October of 2003, during an earlier Ebola outbreak, Barry Hewlett and Richard Amola explained how the local population in Northern Uganda both explained and treated Ebola using local beliefs and customs and the wisdom of traditional healers.  Contrary to Western biases, the authors found a great deal of pragmatism and flexibility in the local healer’s approach and found that local cultural and religious norms could have a positive effect on the control of an outbreak.  The local healers led efforts, which appear to pre-date Western influence in Uganda that are very much in keeping with modern methods of infection control.

“When an illness has been identified and categorized as a killer epidemic (gemo), the family is advised to do the following: 1) Quarantine or isolate the patient in a house at least 100 m from all other houses, with no visitors allowed. 2) A survivor of the epidemic should feed and care for the patient. If no survivors are available, an elderly woman or man should be the caregiver. 3) Houses with ill patients should be identified with two long poles of elephant grass, one on each side of the door. 4) Villages and households with ill patients should place two long poles with a pole across them to notify those approaching. 5) Everyone should limit their movements, that is, stay within their household and not move between villages. 6) No food from outsiders should be eaten. 7) Pregnant women and children should be especially careful to avoid patients. 8) Harmony should be increased within the household, that is, there should be no harsh words or conflicts within the family. 9) Sexual relations are to be avoided. 10) Dancing is not allowed. 11) Rotten or smoked meat may not be eaten, only eat fresh cattle meat. 12) Once the patient no longer has symptoms, he or she should remain in isolation for one full lunar cycle before moving freely in the village. 13) If the person dies, a person who has survived gemo or has taken care of several sick persons and not become ill, should bury the persons; the burial should take place at the edge of the village.”

Yet during that earlier outbreak in 2003, the traditional healers’ approaches to disease control was assumed to be destructive to the enlightened Western approaches.  It was assumed that the local traditions contributed to the spread and that those local beliefs and approaches had to be challenged and discarded. 

In the current outbreak, the same cultural arrogance, and belief in the Western approach being the only acceptable approach, may have initially hindered early progress on disease control.  As an example, one of the factors that is believed to have contributed to the spread of Ebola has been the local burial practices.  Muslim burials in West Africa, are traditional and involve a ritual washing of the dead, a practice that Muslims and Jews have in common (as is true for many practices of Muslims and Jews).  In addition in some cultures of West Africa, during the funeral, touching the face of the dead is also done as a way of showing their love.  Yet research has also shown that people are willing and ready to modify those burial practices if the changes are done with respect for beliefs and the involvement of local religious leaders. 

A new protocol that has been instituted by the World Health Organization addresses these burial practices but does so in a way that respects the cultural and religious beliefs of the mainly Muslim and Christian communities that are now being affected so severely by the disease.  As reported in the New York Times,

“The new protocol emphasized that burials needed to be safe, but also dignified, taking account of religious and cultural sensitivities to build trust in communities where some people have accused burial teams of spreading the disease. Inviting the bereaved to be involved in digging the graves of relatives and offering Muslim families an alternative to ritual washing of the dead, a practice that could involve lethal exposure to the virus, “will make a significant difference in curbing Ebola transmission,” the W.H.O. said.”

Alpha Kamara, a journalist who lives in Sierra Leone in a piece published in USA Today describes this interface between religious faith and medical care quite eloquently from a Christian prospective quoting the book of Joshua.  He states:

“Joshua 1:9 reminded me that although God can be everywhere, Ebola cannot.  God can command.  Ebola cannot……. Ebola is a virus.  We react to it.  But we can control our reactions.”

He goes on to states his thanks to OXFAM, the World Health Organization, UNICEF, and Doctors without Borders who have done so much for the people of Sierra Leone.  Those organizations are at the forefront of caring for people in both a scientific and a culturally and religiously sensitive way.

Without the trust built through protocols that respect beliefs, and the attention to the cultural issues in health care, the work of worldwide health organizations and protocols such as this new protocol for burial practices would not be as successful and would not be able to decrease the spread of the disease as it appears to be doing.  Without the blending of science, faith and culture, we could not vanquish this virus.  If this were a pure biologic approach that did not incorporate local religions and cultures while respecting local leaders it would not have the kind of success that is needed. 

Medicine, wherever it is practiced, must start with trust and respect for the patients and their beliefs.  That includes understanding and respecting their cultural and their spiritual selves as well as their biology.  Without that starting point, the best biologic research and treatment in the world, will never be as successful as it can be.