Wednesdays with Dorothy: Crossing the Threshold

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Dorothy having coffee and dessert
one Thanksgiving Day 

Dorothy had often surprised me over the years.  When my daughter was born and Dorothy got to see her, she made the comment, “I want to see Elaine when she gets her driver’s license.” I thought to myself that I was not at all sure that Dorothy would live that long, but sure enough, Elaine turned 16 and got her driver’s license while Dorothy was busy planning her 76^th birthday party. On her birthday, when we went to pick Dorothy up, I asked Elaine to drive. We proudly announced to Dorothy that the day had arrived, Elaine had her driver’s license and Dorothy was there to witness it.

When Dorothy was in CCU, I didn’t think she would survive once the IVs were stopped, but she did. Once she was moved to the Palliative Care Unit, her condition remained stable enough over the next few days that the medical team ordered physical therapy to her build her strength and began taking about longer term care options such as nursing home care.  We all continued to take turns visiting with Dorothy.  She even talked to me about wanting to make another trip down to Sylagauga, her hometown.

A Gentle Downward Slope

It was on April 10, six days after her being transferred to the Palliative Care Unit, that Dorothy suffered a stroke.  Her right side was affected and her speech was slurred. Her speech and movement improved a little over the next couple of days, but she spent more and more of her time sleeping.  Sometimes when I came by to visit, she would be asleep the whole time. I noticed her breathing was a bit more labored. My professional nursing instinct prompted me to check her pulse and count her breaths: heart rate - 100 beats per minute, respirations - 30 per minute. A normal heart rate is 60 to 100 beats per minute and a normal respiration rate is 12 to 18 breaths per minute.

In spite of her stroke and he declining health, Dorothy remained mentally as lucid as ever. She recognized everyone who came by to visit, and she would smile and make some conversation.  Her stroke had been on Tuesday, and by the weekend she was sleeping much more. When awake, she could still take food and communicate, but those waking times were less frequent. Watching her sleep, I took note of her more labored breathing. Again, I checked her pulse and counted her breaths – she continued to maintain with a heart rate of 100 and 30 breaths a minute. When I left her room on Sunday night of the 15^th of April, she had remained asleep the whole time. I was noticing more congestion with audible rattles in her breathing.

One More Cup of Coffee Before I Go

The next day I had to be at work at 6:30 in the morning. As had been my habit of the past couple of weeks, I left home a little earlier so I could swing by Dorothy’s room before going to my own floor to work. As I walked down the hallway on this particular morning, remembering how she had been the night before, I prepared myself for finding an empty room with news that she was gone.

When I arrived on the Palliative Care Unit, I saw Dorothy’s name still on the board at the Nurses’ Station. I asked the nurse on duty how Dorothy was doing. The nurse then became very wide-eyed and said, “We could not believe it this morning! She slept all night making no response at all – no signs of consciousness. We expected her to die at anytime. Then this morning as we were getting ready for shift-change, her light came on at the Nurses’ Station.  We looked at each other wondering, why is that light on in her room? Then Dorothy’s voice came over the intercom: ‘Could I have some coffee, please?’” We were all amazed that she woke up asking for coffee. but I said, “That's Dorothy!”

The Final Hours

When I left work at the end of the day, I stopped by Dorothy’s room again on my way home. I stayed there until about 8:30 p.m. Dorothy’s friend Lona was there with her, but Dorothy was sleeping – heart rate of 100, breaths at 30 per minute (I had to check).  After I left that night, Dorothy’s friend Ros came by to see her. Ros was on her way back to Canada and had an early flight out the next morning. She told me later in an email how her visit went (you may note a bit of her Australian accent in her turn of phrase):

I had tried to visit on Monday morning but couldn't find a car park, drove off to do a lot of last minute errands and decided to see her that evening.  The day continued to be a little hectic so it was about 8:30 - 9:00 pm by the time I visited.  We had a lovely visit I think, she wasn't really responding, I sat and held her hand and rubbed it gently and sang some songs I think she liked (or tried!)... “All Things Bright and Beautiful,”  “Jesus Loves Me,”  “Amazing Grace,” etc., so I like now to think she was hearing that and was very much at peace those last couple of hours.   I was thinking I would have liked to stay with her until midnight...

In was in fact, very soon after Ros’s visit that Dorothy slipped from this life. We got the call around midnight from Lona who had been with her at the hospital. Dorothy had died at 11:35 p.m. It was a special providential grace, indeed, that Ros happened to have been in town at the exact time she needed to be to visit with Dorothy. I thought how fitting that Dorothy had been with friends throughout the process of dying, and that one of her very dearest friends, Ros, had been there in those final hours to assist her across the threshold between this world and the next.

Dorothy at one of her birthday parties
wearing her tiara
(Probably around 75 years of age)

(Next week I’ll talk about my last Wednesday with Dorothy.)

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Cross-Cultural Communication

Last week I attended an End-of-Life Nursing Conference (ELNEC) and heard several excellent presentations regarding care for patients who are in the final stages of life.  One of the sessions dealt with cultural considerations.  I have posted blogs before on matters of cross cultural communication. Sometimes it has been in regard to interfaith dialogue, sometimes it has been on matters of immigration. The crucial fact to consider is that more and more we are living in a pluralistic society and communication across cultures is becoming more and more important.

During that ELNEC session on Cultural Considerations, we were given a model for cross cultural communication. I thought it was a good model that could actually apply to other fields than just healthcare. The model is taken from an article in The Western Journal of Medicine (1983), “A teaching Framework for Cross-cultural Health Care," by Elois Berlin and William Fowlkes. (You can read the entire article here). 

Berlin and Fowlkes use the acronym L-E-A-R-N to outline their model:

     L  -Listen with empathy and understanding for the patient’s perceptions of the problem

     E  -Explain your perceptions of the problem

     A  -Acknowledge and discuss differences and similarities

     R  -Recommend treatment

     N -Negotiate agreement

The starting point in cross cultural communication should be to realize that there are differences between cultures in terms of customs, values, interests, needs and priorities. We in the dominant culture should never assume that our way of seeing things is the best, especially for someone who is coming from a different culture.  For true communication to take place, we must indeed listen and try to understand the other’s perspective. 

In matters of healthcare there may be a treatment that the healthcare provider sees as beneficial, but there may be some aspect of the treatment that is misunderstood by (or even offensive to) someone coming from a different background. It is crucial for the healthcare provider to understand where the patient is coming from in order to explain why a particular treatment is recommended. It is also important to realize that our way may work just as well if it can be accommodated to their cultural practices or preferences.

I can see this as an important model for any cross-cultural interaction. Today more than ever we need to let down our barriers and defenses and truly listen to those from other backgrounds living among us. I can also see this model being beneficial when we are talking in terms of politics, lifestyles, and community action. Might we use this model in the so-called "culture wars" in the U.S. that we see referred to so often in the media? We must at some point lay down the polarization that comes when people insist that their way is best and no other way is acceptable.

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Visiting the Sick and the Dying

My wife, my daughter and I – along with some other friends – have spent many days sitting with our friend Dorothy at the hospital over the past couple of weeks. She is in the Palliative Care Unit and is in the process of dying. She has lived a good life against incredible odds. I stayed with her for about eight hours yesterday. It is not likely that she will make it through the weekend. This is what my wife said:

“As Dorothy ever so slowly slips away, I am reminded of Mother Theresa who said, "Let us touch the dying, the poor, the lonely and the unwanted according to the graces we have received and let us not be ashamed or slow to do the humble work." Dorothy is giving us an opportunity to hold the hand of Jesus as he looks upon us in love.”

Dorothy Burdette
sitting on her front porch

During the past couple of years, I sat with Dorothy Burdette at her apartment and got her to tell her life story as I recorded it on tape. I was able to get her words down in her own book which I presented to her on her 82^nd birthday last February. I’ll tell you more about her on this blog sometime in the weeks ahead.

Hoping for a Good Death: End of Life Care

"Jacob Blessing the Sons of Joseph" oil painting by Rembrandt

I attended a symposium last week titled, “Palliative Care: In Search of the Good Death” at Samford University’s Cumberland School of Law. The presenters included medical doctors and legal scholars who talked about end of life care within the context of modern healthcare systems and societal attitudes toward death. I attended the symposium as a healthcare provider thinking of physical needs of those facing death, but another reason I attended was a realization of the need for spiritual care in the final stages of life.

As a Catholic convert, one of the things I heard that was new to me was the request to pray for a holy death for one parishioner or another.  My first impression upon hearing that prayer request was to imagine how this petition might have been viewed in years past, knowing that this is a prayer dating back through the centuries. I thought of how many terrible ways one could die before the advent of modern medicine. What kind of pain would a cancer victim have endured 200 years ago? What about those with diabetes before the days of insulin who gradually became sicker and sicker until their bodies just shut down?  There were so many other unpleasant ways to die from injury, infection, pestilence and famine, with very few effective drugs to mediate the suffering.

As I thought further, within the context of the Roman Catholic Church, there was also a fear of judgment and punishment which only began to abate somewhat after the fresh air of Vatican II.  The hope was to be able to have a priest present at the time of death so that sins could be confessed, absolution given and the holy Eucharist received. It was only then that one could be assured of a happy repose free from the torment of judgment.  Consider the traditional petitions:

“From sudden and unexpected death, deliver us, O Lord.”

“May we be free from sin when we leave this world and rejoice in peace with You forever.”

                                  “ Remove far from me every kind of sin; obtain for me that my
                                   death may not come upon me unawares, but that I may have
                                   time to confess my sins sacramentally and to bewail them
                                   with a most perfect understanding and a most sincere and
                                   perfect contrition, in order that I may breathe forth my soul
                                   into the hands of Jesus and Mary. Amen”

Death could be a frightening thing in days gone by, as it still is today, though most of us try to push thoughts of death into some undetermined point in the future.  At the symposium on palliative care, we heard medical and legal experts discuss ethical issues surrounding end of life care, societal attitudes, and ramifications in healthcare/insurance coverage.

The "Good" Death?

Dr. Ryan Nash, Director of UAB's Palliative Care Leadership Center, began the symposium by presenting an overview of the hospice movement and the palliative care movement.  Referencing Rembrandt’s painting, “Jacob blessing the Sons of Joseph,” Dr. Nash said that the Old Testament narrative of Jacob’s death informed the hospice movement. In that narrative, one finds an acceptance of death, blessing, grief, good burial arrangements, and no mention of suffering. Modern medicine has sought to triumph over disease and death. The hospice and palliative care movements came as an answer to medicine’s triumphalistic denial of death. The goal of hospice at the outset was to return dying and death to the community, taking it away from the sterile medical environment. Palliative care has sought to bring some of the care measures of hospice back into the hospital.

With hospice and palliative care, we have acquiesced to the finitude of human life, but we are lacking in a unified ethic to offer blessing and hope.  The ancient prayer of the church had been to prevent sudden and unexpected death (having time to prepare), whereas the common wish today is to die quietly in one’s sleep.

Dr. Nash suggested that the way to move forward is by way of informed respect along with the acceptance of life’s finitude and medicine’s limitations. Informed respect takes into account the patient’s belief system as well as that of that of the healthcare provider.  Such attitudes would lead to a pluralistic palliative medicine.

Dr. H. Tristam Engelhardt, whose background is in medical ethics and philosophy, then proceeded to give a sweeping picture of the history of thought and philosophy in western civilization. Our problem today, he summarized, is that there is no one canonical secular morality that is agreed upon. Many issues have been de-moralized and deflated.  For instance, one may ask which society seems better when comparing cultures.  Values may be security, liberty, prosperity and health. These ideas could be agreed upon, but different cultures will rank these differently in importance.  Englehart made a good case that “The moral system constructed in the 13^th century went belly-up in the 19th century.”  Our society today has deep and incompatible differences, most evident is the fact that people with theistic and atheistic world views live and work side by side.

Rationing, Death Panels, and Healthcare Reform

Jack Nelson, on faculty at the Cumberland School of Law, gave a presentation on healthcare in the U.S. and in the United Kingdom. He succinctly summed up our healthcare dilemma by stating that “Medicare is unsustainable,” and “rationing healthcare for the elderly is political hemlock.”

Kathy Cermina, a professor who teaches health-law-related courses at Nova Southeastern University, gave a presentation on end of life care.  She pointed out how hospice care provides an essential health benefit that is high-value and low cost.  Many do not enter into hospice care until they have only days to live. She effectively made a case for a system that would allow for concurrent care thus granting patients and families opportunity to receive the benefits of hospice earlier.

Enhancing Autonomy: Protecting Patients from Conflicted and Coercive Healthcare

Elizabeth Kvale is a board certified physician in Family Practice and Hospice and Palliative Medicine, currently doing research in palliative medicine at UAB.  She spoke of the importance of autonomy to physicians, the need for health literacy, and problems when there is a conflict of interests in decision-making and healthcare delivery. She stated that palliative care enables autonomy by prioritizing according to the patient’s values, clarifying options, increasing health literacy, and being oriented around the patient and family.

During discussion time one interesting concept that was mentioned was the millet system, whereby under the Ottoman Empire, the ethnic groups within the empire (Muslim, Jewish, and Christian) could each operate under their own legal system. In discussing how different groups within our current pluralistic society coalesce around the common values of their particular group, some comparison was made to the millet system under the old Ottoman rule.

Another vital point that was made in discussion was that one thing we can all do to help facilitate end of life care in a way that we would consider humane and in accordance with our beliefs and values is to have advanced directives. Most of us have an idea of what our wishes are concerning end of life care, but so few of us have actually taken the time to put those in a legal document.

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The symposium certainly provided important information on aspects of healthcare and end of life care. It also raised some important questions of how we can bring meaning to our living and dying in the modern world.  Here are some other sources online that you may find interesting:

Death and Budgets by David Brooks 

Thank God for Death, by Michael Dowd 

Death,Budgets, and Generational Justice, by Connie Barlow 



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