Allow Natural Death

January 2011 will be gone in just a few hours. A total of 16, 945 words were posted in an effort to gratefully explain my interest in concepts of allowing natural death. I still want fewer elders to suffer needlessly. I still hope for more stories of good deaths. I continue to collect the statistics. I have thanked a few wonderful people who have taught me important ideas along my way. I have barely scratched the surface. I have told some stories of dying elders and their families who have much to teach us all.  I have debated some pro’s and con’s of DNR vs. A.N.D. I have commented on coverage of health care reforms that impact the care and treatment of frail elders. There is so much more to say.

But most importantly I hope that these posts will make others talk. It is the only way for us to help one another to age and die well.

“…evidence suggests that patients often prefer a more conservative pattern of end-of-life care than they actually receive — and that a patient’s wishes can be less influential than the practice patterns at the hospital where care is delivered.”

The statement above is from The Robert Woods Johnson Foundation. They are an organization that spent 350 million dollars in 2009 to fulfill their mission  “to improve health care for all Americans”.  The statement above supports  surveys that the majority of persons would choose a death that more closely resemble the values of allowing a natural death. This is to say that most people are not getting what they say they want most of the time. Mr. Ford’s story is one that illustrates how this might happen.

Many factors allowed the wishes of Mr. Ford and his family to be over ruled. The first is likely the small amount of time available to fully know a family before a plan is made. The level of “busy-ness” in most places that care for elders is inadequate to say the least. So many elders with so many complex care needs, decrease the amount of time that every level of worker has to invest in forming relationships with families who must be must be vocal and clear and ideally, present, throughout an admission. Time is in short supply for all concerned.

While the lack of time decreases relationship, it also decreases understanding when considering the language difference of patients and families and the many medical professionals they meet. It must be another language that physicians and other professionals often speak when it seems a person must learn a new vocabulary before having a conversation about an elderly person’s care needs. The complexity of health  care systems is one that workers struggle with each day, but so do families who are completely unfamiliar with the needs of an aging parent, and how can they better care for them. In Mr. Ford’s family, no member was knowledgeable about the availability of hospice services. That word wasn’t”  mentioned.

We have made “hospice” a dirty word in some circles. But by not mentioning that death is pending for all frail elders, families are encouraged to deny that it will occur and not given the opportunity to plan  for the end that is approaching. Mr. Ford’s family sought to respect his end of life wishes and was  ready to make sacrifices in order for him to achieve them. It is rare to see a family so united in their hopes of being able to care for their loved one.  Sometimes though, workers in the health care realm are paternalistic in their approach to care planning.  But families must be encouraged to exercise their right to shared decision making and family centered care. Those ideas only gain meaning when patients and families speak up for them.

In order to have end of life wishes respected, patients and families must be ready to consistently and repeatedly push for them. Please don’t expect that doctors and other health care workers will speak freely about allowing natural death. That is just not the thinking in most hospitals and nursing facilities. The focus is more often to test and treat and prolong life, even when that is not what most patients and families would choose. End of life planning takes the time and relationship that only loved ones can truly give to this important part of their family’s life together. Mr. Ford’s family possessed the courage and love that was necessary.

Mr. Ford was 92. He  was scheduled to be discharged from the hospital on the following  day. Plans had been made by his physicians and his Care Manager to send him to a Skilled Nursing Facility (SNF). He would go there to get his strength back since he  had become generally weak and was no longer able to walk.

He had spent the prior two weeks in the hospital. His family brought him to the emergency department when he became increasingly debilitated at home. He was admitted when lab work showed that he was dehydrated. During his admission more problems were discovered  by his medical team. He had congestive heart failure that was making it difficult for him to breath and he was infected with C. dificile diarrhea.

Until two months ago Mr. Ford had been healthy enough to live independently with his wife, but also needing the strong support of family living near by. His mental status was never in question. He was fully aware of all the events that had led to this admission. He had never fully recovered from a bout with pneumonia two months earlier. It was the antibiotics he took to treat the pneumonia that caused his susceptibility to the C. dificile diarrhea. It was his second bout of this infectious diarrhea.  His doctor thought he was getting better when it returned with a vengeance. He just couldn’t get rid of it and it was about the worst experience of his life. He had become so weak he could no longer walk to the bathroom. And that meant that he needed to wear adult diapers and he needed someone to change them when they were soiled. It seemed that the diarrhea was constant for awhile. His wife wasn’t able to help with this part of his care. She was 87 and not even able to care for herself. The Ford’s granddaughter, Lisa, had agreed to stay with them to see them through this crisis. The home health aide and visiting nurses were a help when Lisa  had to go to work. It had been six weeks now. She had been a godsend and she loved her grandparents very much.

When Mr. Ford arrived in the room where he would be admitted, the staff noticed that he had dried feces on his legs and buttocks. They cleaned him efficiently and politely. He was humiliated. Again. He had grown tired of all of this. His diarrhea eventually subsided with the help of the intravenous medications he was given. But he had no energy to eat. He even lacked the energy to talk to his family when they visited him. But he apologized to his wife for this as she sat sadly and quietly at his side. The heart failure was not getting better and he knew that it would not. His heart was old. He was old and feeling so worn out. A tear slid down his cheek as he tried to make his wife understand that he was tired. He told her he was ready to let his life be over. If only he could return home just one more time.

When her grandparents told her this, Lisa called her family together to see what was possible. Could they help Mr. Ford to go home? Would they agree to let him accept the care of hospice? Could they help him to go home to die? Were each of them ready to let him go? The large family was ready to give Mr. Ford his wish to go home to die.

The following day, three members of Mr. Ford’s family were in his room when his physicians arrived to tell them that they had completed all the paperwork, the ambulance had been scheduled. Everything was ready for him to go the SNF. His family told them of the change of plans. They told them that Mr. Ford wanted to go home. They told them that they were ready to take care of him. And, yes they knew that he would likely die in a few months. The physicians seemed to be upset by this news. They were insistent that Mr. Ford should go to the SNF. He shouldn’t give up. He could get better. He didn’t need to accept death now. They eventually won the family over and Mr. Ford was discharged to the SNF for rehabilitation.

This is a story from my experience in an acute care teaching hospital. It is one that makes me feel sad and angry even today as Mr. Ford’s wishes for end of life care, though clearly stated by the patient and his family, were over-ruled by the medical staff. To me it is an abuse of the power when families that don’t have the savvy to negotiate these complex care systems are dissuaded from enacting their own values. Mr. Ford was never strong enough to return home and died in the nursing home where he never wanted to find himself.

Tomorrow’s post will be a discussion of some of the factors at play for patients like Mr. Ford.

This Letter to the Editor was printed in the January 18, 2011 issue of the Rutland Herald here in Rutland Vermont.               I wrote it in response to the debate here in Vermont as we consider the “Death with Dignity” bill in our legislature.              The heading was added by the editorial staff and not by me.

Appreciate precious days

No matter what side of the “death with dignity” debate you stand on,
let the topic itself bring us to a new appreciation for each day we
can enjoy with our loved ones. They are all the more precious when
we are reminded that someday they will be over.

I am grateful to have worked with some amazingly insightful nurses. One of those truly special ones, Angela, was returning to the hospital environment to work after many years as a hospice nurse.  That is not a common career change for a nurse and it is certainly a difficult one to make. After years of focusing on the comfort of the patients and families who had accepted the inevitability of their impending death she was now working in the world of “curative” technologies applied to chronic and eventually terminal illnesses. This type of hospital environment is called acute care and energies here are focused on prolonging life with every manner of testing and treatment available. I asked Angela to tell me the one thing that she wished most to communicate to patients and families. Here is what she said. “Above all else beware of the word prolong“.

What Angela means when she says this is that the word prolong is used when it is possible to make life go on while not improving the quality of life. It is likely that a family may hear this term when an intervention such as dialysis, feeding tubes, intubation is being considered (or has already been started as is the case when an elderly person in crisis has already been resuscitated). Often what is not heard by families who are already in distress, is that the actions will not be able to fix, cure, improve, restore the health of that person. Often families also don’t hear that these interventions will place a burden on the individual or their family in order to continue that intervention. For instance, in the case of a feeding tube; the use and care of that tube will require someone to learn how to use it or to send the person with that feeding tube to a skilled nursing facility where professionals can do that. What if the use of a feeding tube would mean that the person could never again be cared for at home? And what if the elderly person becomes confused and begins to pull on that tube? Would the family consider tying down the hands of that individual or to keep padded mittens on their hands to make pulling on the tube impossible? If the tube is being used because the person is choking when swallowing – is it clear that nothing will be given to the elderly person by mouth? Not food or drink or medications? How far will the family be willing to go to allow the life to be prolonged?

I hope it is clear that efforts to prolong a life are very complicated. Often  the elderly person is no longer able to make the decisions for themselves.  The balancing of the benefits versus the burdens of a given treatment differ for each person and their family. These are difficult decisions to make, especially if the elderly person has not discussed their wishes with their loved ones. Often when we hear the word prolong it is a time to consider the quality versus the quantity of life. Or maybe we should talk with our loved ones about our thoughts on these topics now.

Thank you, Angela, for helping us all to understand the medical community’s end of life language.