Allow Natural Death

Archive for March, 2011

Thank you, June Carter Cash

June Carter Cash died in 2003 at the age of 74. She was a musical performer known for her country roots and for her 35 year marriage to Johnny Cash who died four months after her death. It was widely reported that toward the end of her life when she was asked how she was doing, she said, “I am just trying to matter.” I love that. It says it all for all of us, doesn’t it?

As I get older, that is all I want too……to matter.

Don’t say that!

Old.

Age.

I am learning just how serious many of us are about not wanting to say these words or any words that even vaguely resemble them. But if we don’t say these words, how can we explain what we are seeing  and feeling in our bodies?

A friend of mine told me that she had recently gone to her dentist when a tooth developed a crack that concerned her. Her dentist told her that this is just something that happens. “To everyone?” my friend asked. Choosing his words carefully, her dentist explained that it happens when teeth have been around a long time. “Do you mean when we get old,” my friend asked.  “Yes, but we don’t say that word here,”  was the dentist’s response. Oh.

Today my Domestic Adviser had an appointment with a new dermatologist. An area of skin was suspicious looking and so it was time to seek assurance that it wasn’t the big C. Assurances were given and so what was it then? Turns out it was a skin condition that we can all look forward to as we ….age. But he was reminded by the dermatologist and her office staff that “we do NOT say the “A” word. And we don’t say the “O” word either.” Really.

This explains a lot. I guess I now understand why many of us are taken by surprise by the changes that the years bring to body and mind. I have a friend who is in her 70’s who told me that she wishes for a book that would  tell her all about the changes that we can expect as we get older. So it wasn’t just me who missed the health education classes about aging. And I am not aware that the book exists that can tell us all the NORMAL change that takes place merely because we have not died. Yup…all it takes to age and grow older is not to die. If it seems that I am stating the obvious … evidently I am not if it is true that we must not say those words.

Being the realist that I am, I wonder how then, we can ever hope to be prepared for the changes that aging and getting older brings? If it is not allowable to use these words then it is clear to me why so many of us avoid conversations about death and dying.  And why we are so reluctant to complete the task of end of life planning.

I’m beginning to get it, but I really don’t like it.

Who has the time?

Time is everything. Its importance in the care of frail elders (or any other group of patients for that matter) can’t be overstated. After twenty years on the front lines of  health care, I have watched the amount of time that is spent with patients erode as treatment needs and the completion of documentation has taken precedence over all other tasks. Physicians and nurses have been heard to complain about this, but with no relief in sight…only additions to the treatment and documentation needs of patients. It is a problem that grows worse not better. Thinking back to the systems talk I was sharing a few posts ago, recall the plight of the family member who anxiously awaited the physician’s presence so that she might know the condition of her frail and elderly mother. The lack of staff members’ time is critical to the family’s education and understanding of information that will assist them in decision making. Physicians don’t have time to spare and neither do nurses. Social workers have increasingly taken on the “problem cases” as dysfunctional patients and families show themselves to be the squeaky wheels that get the grease. But don’t forget the importance of the spiritual care staff whose role exemplifies the gift of time. They are adept at being silently present and more than any other professional group, have the time to give to this important part of knowing a patient and family.

Facilities that have chosen spiritual care professionals as the group to negotiate end of life care planning with families has given their patients the gift of time. And anyone spending time in a hospital or nursing facility knows how rare this gift has become.

acknowledging the spiritual in health care environments

It has been said that changing just one thing in a system will have repercussions elsewhere. The practice of engaging members of the pastoral care department to take the lead in shared decision making at the end of life, is something that would change much of the way that patients and their families are cared for. This is a system that makes sense in many ways, not least of which being that this is the group of health care professionals with the  time to give to these heartfelt conversations. And obviously this is a group who is well versed in the spiritual nature of death and dying.

By assigning spiritual care professionals the task of assisting patients and families in choosing modes of care  as they are nearing the end of their lives is to bring back the elements of care that have been lacking in many hospital environments. The spirit, soul or heart of care for patients and their families has been losing its important place in care environments as medical treatments have moved to the fore. Historically, health care environments had their origins in religious institutions where care was provided by female members of the religious order. Care emphasized the comfort of those who were dying  and spiritual care was no doubt at the top of the list. Treatment of disease was almost non existent. As knowledge of the body and disease processes grew, so also did available treatments; drugs, procedures, tests, technologies, surgeries, new drugs, assessments, protocols, best practices, specialists…the list goes on as new opportunities for medical intervention grow every day. The systems of care that have arisen in hospitals to accommodate this ever growing list, have edged out the spiritual needs of patients that are almost never given priority. While America has seen a downturn in regular attendance at religious services, the spiritual realm often becomes newly relevant during a health crisis. It almost always informs the decisions that are made when death is imminent.

Occasionally, a voice is heard that seeks to acknowledge the spiritual realm in the lives of those who are hospitalized. Healing and meditation gardens are built. Members of the clergy are free to serve communion or the Holy Eucharist to their parishioners who are admitted. Spiritual care professionals seek to bring solace, a listening ear or a quiet presence to patients and families at most health care facilities. To raise their level of importance as members of a care team by assigning them the task of negotiating the level of life saving treatments and/or comfort care makes abundant sense. But this is an unfortunate rarity.

Tomorrow….who has the time?

eight posts ago

Eight posts ago, I wrote about a recent conversation with a staff member(CK) at St. David’s Medical Center in Austin, Texas. This facility was the first to adopt the “Allow Natural Death” order for care that is available to patients who may choose it. In that post I stated that the manner in which end of life decision making is done at this facility had given me much to think about. For someone who has thought about, read about, talked about the concepts of allowing natural death, this staff member told me something I had never heard about, read about, or thought about before: the end of life conversation is negotiated primarily by the pastoral care staff. For a person such as myself who has always worked in academic medical centers in the northeastern US, this was a game changer. What CK described was almost a tag team approach whereby the physician delivers the clinical aspects of the patient’s condition (aka the bad news) to the patient and their loved ones. When the physician has left the room the pastoral care staff member enters the room to assist families in the decisions they will need to make. At St.David’s the choices include; FULL CODE – all medical treatments are enlisted to prolong the life of the patient, INTERMEDIATE SUPPORT- ALLOW NATURAL DEATH – medical procedures would continue to see if the patient can recover, but if not then the patient would be Allow(ed) Natural Death without coding, and lastly COMFORT SUPPORT-ALLOW NATURAL DEATH when all care is with the goal of providing comfort. This is the system that is in place for end of life decision making.

If you have been reading along, you may have begun to wonder why this new way of doing end of life business would prompt all the talk of systems. That long and winding systems road was an effort to explain all the paths that must be taken, to arrive at that moment when life and death decision making will take place – an attempt to describe some of the many factors that will contribute to the effectiveness of that all important conversation. This is the scenario as it might be played out in a hospital.