Sunday, February 13, 2011

End of Life Care: A Time for Listening and Caring

   In her article entitled, "End of Life Care: A Time for Listening and Caring", The Jurist 59 (1999) 147-160, Dr. Christina Puchalski begins by discussing the traditional medical approach to end of life care. This traditional approach is based upon the "warrior" model of the doctor-patient relationship which teaches physicians that illness is something to be defeated and any discussion of end of life issues with a patient is tantamount to surrender. Therefore, many physicians feel extremely uncomfortable speaking about end of life care with their patients and in many cases the patients' own desires regarding how they wish to live their lives are never taken into consideration. She states that most people would prefer to die in the presence of their loved ones and yet most will die in the fairly stale and cold atmosphere of a hospital intensive care unit with no one present save the on-duty nurse. She also states that documents such as a "Do Not Resuscitate" order (DNR) were often understood as a "Do No Rounds" order by the attending physicians and those people who have signed such an order were often not visited by the physicians.
   She does point out that this approach to end of life care is changing. One reason is an increase in life expectancy. Today we can do things to prolong a person's life which would have been considered unthinkable only a few decades ago. However, by prolonging a person's life medical science also runs the risk of prolonging their suffering. Questions such as "How long do we prolong a patient's life when they are suffering?" and "What types of care do we give them?" are among the more basic medical ethics questions being addressed today. A study from the late 1980s and early 1990s entitled SUPPORT (The Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment) was conducted over a five year period at a number of prestigious hospitals. The goal was to explore and improve decision-making and patient outcomes for seriously ill, hospitalized patients. Researchers apparently found that physicians were unaware of their patient's clear preference for a living will and/or DNR statement and even when the physician was aware of it, these directives were often not followed. Most patients expressed a desire to die at home and yet every one of the patients in the study died in the hospital. This study demonstrated that end of life care wishes were not respected, people were in pain, and they died in the hospital. Dr. Puchalski stresses the importance of clear, open, and honest communication between the patient and their physician regarding the patient's desires.
   She goes on to discuss the new model of end of life care. This new model is much more holistic. In addition to looking at the patient's physical needs, this model also looks at the social, emotional, and spiritual needs as well. Many medical schools are now offering courses on spirituality in medicine. Since the patient is not simply a collection of diseases, but a living, breathing, rational, human being it is essential that every aspect of a patient's life be taken into consideration when discussing treatment options and end of life care when treatment options are no longer beneficial.
   For most patients, their major concern with regard to a life threatening illness is not the illness itself, but the thought of being in extreme pain for prolonged periods of time, without any relief, and being unable to maintain a worthwhile quality of life. In this new model of end of life care, good pain management is essential.
   It is also extremely important that a proper spiritual assessment be done by the physician while speaking to his or her patient. Spiritual issues often form the basis for meaning and purpose in a person's life. Many people experience a certain level of anxiety while in the hospital because they have difficulty placing their present situation within the framework of their spiritual beliefs and this disconnect can become quite unnerving. Dr. Puchalski makes reference to "spirituality" rather than religion; however, the context is the same in either case. Other issues such as a feeling of hopelessness or isolation on the part of the patient can be addressed in spiritual terms. The author does stress that importance of the physician making use of the chaplain as a valuable resource in this regard.
   As a person near the end of life there are other issues which arise which also need to be seriously considered and addressed. The author refers to the writings of the late Dr. Elizabeth Kubler-Ross and her stages of dying. Dr. Puchalski uses the acronym LIFE (Life Review, Identity, Forgiveness, and Eternity) to describe these various stages. Patients will often begin to reflect upon their own lives and ponder various life choices, such as "Why didn't I finish my degree?", "Why didn't I get married?", or "Why did I get divorced?". Addressing these questions from a spiritual, psychological, and/or emotional point of view may help the patient place such issues within a proper framework and thereby bring about a certain return to wholeness. The same is true with regard to issues such as "Is there anyone I need forgive?" or "What will happen to me after I die?". These are profound questions and must be taken seriously. At this point, the physician is no longer taking steps to simply restore physical health to the patient, but helping him or her to move beyond this to the world to come.
   The 1983 Code of Canon Law states that "the supreme law is the salvation of souls" (CIC #1752). Everything that we do as ministers is done in order to help the faithful to know, love, and serve God in this life so that they may be happy with Him forever in the next, as the Baltimore Catechism told us. The Church teaches us that we are embodied spirits and therefore everything we say or do in this earthly body has a spiritual significance.
   This past summer I had an opportunity to complete one unit of Clinical Pastoral Education (CPE) at the Reading Hospital and Medical Center in West Reading, Pennsylvania. One of the major aspects of my CPE assignment was doing a spiritual assessment of patients' needs while working as a member of the hospital care team in the General Surgery, Surgical Intensive Care, and Oncology units. While on night call, I met with numerous patients who suffered from various degrees of anxiety due to the fact that they were having difficulty placing their present experience with their spiritual and/or emotional framework. When questions were asked, there were often asked in an effort to help the patient make sense of his or her experience and give them the feeling that they have been listened to. Once they are able to verbalize their feelings and experience a sense of validation, these patients are usually able to make better sense of what they are going through and this brought about a profound calmness which had earlier been lacking.
   The author's point is clear. She makes some very important statements regarding the holistic approach to medical care and the need for a social, emotional, psychological, and spiritual assessment of the patient. Catholic teaching on end of life issues addresses the notion of quality of life, pain management, and all the other issues which are essential to the proper care of patients. On several occasions in the hospital I had an opportunity to discuss end of life issues with various Catholic patients and/or their families. In each case, they expressed their gratitude for taking the time to explain the Church's position so that they can make a fully informed decision regarding what method of treatment to take or what steps they should take regarding end of life care. As ministers, we have a responsibility to educate the Catholic faithful regarding Church's teaching about such issues as medical ethics and help them to be able to connect that teaching with their experience as members of the Body of Christ. Canon #773 of the Code of Canon Law states, "It is a proper and grave duty for pastors of souls to take care of the catechesis of the Christian people so that the living faith of the faithful becomes manifest and active through doctrinal instruction and the experience of Christian life." For example, it is important to instruct one of the faithful that he or she need not undergo certain medical procedures, such as dialysis, is there is no reasonable hope of recovery. This is referred to as a disproportionate means according to Catholic teaching. For years, the Church referred to "ordinary" and "extraordinary" means; however, based upon the present state of improved medical technology there are many procedures, as a heart by-pass surgery, that would have been considered "extraordinary" only thirty years ago, but are now quite "ordinary".
   One of the most important aspects of pastoral care which we can provide as a priest is the distribution of the Sacraments. The Anointing of the Sick and the reception of the Eucharist can help to sustain a patient in their illness and offer them hope and comfort either in their recovery or their preparation for death. As Catholics, we much also proclaim to those we minister to that in death life will not end, but change.
Our belief in Eternity is a great source of comfort for the Catholic faithful as they struggle with illness. The conviction that they will be reunited with their deceased loved ones and be able to enjoy the full presence of God for all eternity is a major source of comfort and peace.
   The sharing of these truths with the Catholic faithful is our obligation as priests since the norm to be considered above all else is the "salvation of souls" which is the supreme law of the Church.

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