Oncologists and Surgeons Bankrupt Hospice

This Connecticut hospice has filed a certificate of need in order to be able to close.  A member of the hospice’s board explained that over the past three years, the average patient stay at the center fell from 22.1 days to 9.6 day.  “People are being kept in these intensive therapy regimens longer, regardless of the outcome and in some cases their quality of life." 

Indeed, it is no surprise that people going to hospice (a) are much sicker, (b) have much more intense needs, and (c) move almost immediately into a situation where they are actively in the process of dying.  In the past week, the cancer profession has been charged with espousing an “ethos of very small benefit at whatever cost.”  And Kwok reports in the Lancet that nearly 40% of patients over 65 years old had surgery in their last year of life.  

Paternalistic "Handling" of Medical Futility Cases

In a forthcoming article in HEC Forum, Colleen Gallagher and Ryan Holmes describe how medical futility cases are handled at the University of Texas MD Anderson Cancer Center.  While most of their advice is good and standard fare, I was a little concerned by one suggestion.

The authors note that they rarely use the formal TADA mechanism.  That is fine.  Other Texas facilities similarly report that less formal mechanisms are usually (though not always) sufficient to resolve futility disputes.  What concerns me is one of the authors’ other "suggestions for community physicians."  Gallagher and Ryan write: "do not offer options that are not medically appropriate."  They explain that physicians should offer only "reasonable options."  They should not offer: (a) treatments with "slim chances," (b) "treatments with high risk-to-benefit-ratios, (c) "treatments with "a low likelihood of achieving notable results," or (d) treatments the physician does not "feel comfortable in offering." 

In July, I wrote about "illusory consensus."  I think that concept applies here.  Following Gallagher and Ryan may avoid conflict.  There may be agreement and consensus.  But it is conditioned on deception.  

I agree that providers should not offer false hope.  But preventing or resolving conflict by withholding options and information is very dangerous.  It is especially dangerous because there are few lines (medical or ethical) that clearly separate the medically appropriate options from the medically inappropriate options.  That lack of definition is a constitutive feature of medical futility.  Gallagher and Ryan propose dealing with medical futility situations by pretending that there is literally nothing more that can be done.  This gets too close to constituting a hard paternalistic abandonment of informed consent.   

Advance Care Planning and End of Life Care Conference

The International Society of Advance Care Planning and End of Life Care will be holding its third annual conference in Chicago from May 31 to June 2, 2012.  Abstract submissions close January 2012.

Alka Tiwari: Give me a bone marrow transplant or give me death

On September 30th, Alka Tiwari filed a complaint in the courts of the Indian state Uttar Pradesh asking the government either (1) to provide funds for her treatment or (2) to allow physicians to administer a “poisonous injection” to get rid of the unbearable pain.  

This is certainly not the profile of the typical patient utilizing the ODDA or WDDA.  But this is exactly the sort of case that opponents of PAD legalization in other states suggest would be become increasingly common.

Realistic Hopes for Dementia Patients

A study published in last week's New England Journal of Medicine questions whether nursing homes too often send Medicare patients with advanced Alzheimer's disease or other dementias to the hospital near the end of their lives.  The following opinion piece was published in yesterday's Battle Creek Enquirer.

Advanced dementia is a terminal condition, yet often family members who have watched their loved one slowly fade over a period of months or years cannot come to grips with the fact that they are dying. They want "everything possible" done to help their relative, even when it means subjecting them to surgery and other procedures that may keep them alive but increase their pain and discomfort.

When family members, against all odds and advice, refuse to give up "hope" that the patient will "recover," a skilled care facility is obligated to cooperate with their wishes, including hospitalization that in no way will enhance the patient's quality of life.  It is this very expensive and usually futile care delivered near the end of life that not only can prolong a person's suffering, but also is a major contributor to soaring health-care costs.

While economic greed may contribute to the problem of needless hospitalizations from nursing homes, more often families' unrealistic expectations and demands are the deciding factor.  Yet medical professionals, clergy, politicians and others are loathe to address the issue, lest they be accused of "rationing" care or being "heartless" to the needs of the aged.  At some point a nationwide discussion of the issue must take place.

To bring cost into a discussion of end-of-life care makes most of us very uncomfortable. We don't want to attach a price tag to dying. But terminal care raises both emotional and economic issues. It is as cruel to keep an incapacitated elderly person clinging to life by a thread as it is costly.  We must be realistic in our hopes for our loved ones, and accepting when their journey here on Earth is coming to an end. Otherwise we risk paying an exorbitant price both in human misery and health-care costs.