Ministry Through End-Of-Life Care
A generation or two ago, when medicine was primarily low-tech, a majority of patients died quickly of acute illness, usually in their own homes, cared for by families, neighbors, and church friends. But things have changed. Now, 90 percent of North Americans die slowly from debilitating disease (organ failure, malignancy, dementia, etc.).
by Robert Orr, MD, CM
Preface: CMDS has been battling Physician-Assisted Suicide initiatives from coast to coast, educating the public and politicians about the grave dangers of such a cultural shift. In the following article, a clinical ethicist who is a member and former chair of the CMDS Ethics Commission explains that the most effective professional response to PAS is for all physicians to learn and provide better end-of-life care. For Christian physicians, this responsibility is also an opportunity—to minister the compassion of the Great Physician to our dying patients and their loved ones. —David Stevens, M.D.; Executive Director, CMDS
A generation or two ago, when medicine was primarily low-tech, a majority of patients died quickly of acute illness, usually in their own homes, cared for by families, neighbors, and church friends. But things have changed. Now, 90 percent of North Americans die slowly from debilitating disease (organ failure, malignancy, dementia, etc.). And, because of the use of high-tech interventions and because family are often unavailable to care for their dying relatives at home, 74 percent of them die in institutions.
The hospice movement in North America began as a paraprofessional response to the deficiencies resulting from these changes. However, hospice is currently poorly funded, available to only a restricted number of individuals, and inadequately utilized. While the percentage of U.S. deaths in hospice has slowly climbed to 17 percent, the length of stay in hospice care before death has fallen dramatically from thirty-six days a few years ago to just twenty days in 1998.
The overall result of these changes is that far too many individuals and families face terminal illness without adequate professional, social, or financial resources. What an opportunity this presents to Christian health care professionals and to churches to extend themselves in a time of such great need! Instead of discussing or practicing assisted suicide, excellent end-of-life (EOL) care is the appropriate response to EOL distress.
The medical and nursing professions have slowly recognized this inadequacy and are making major efforts to increase the availability of improved palliative care services in hospitals and communities. Recent medical and nursing literature abounds with material on palliative care. Palliative care is becoming recognized as a medical specialty (see sidebars on page 27 and 28). The AMA, with generous grant support from the Robert Wood Johnson Foundation, has launched a major program called "Education for Physicians on End-of-Life Care" which combines excellent information and skills-development.
Basically, people who are dying need only two things: good symptom control and human presence. Textbooks have been written on the many components of excellent EOL care, but in this article we will briefly address only a few issues.
Advance Care Planning
Primary physicians should talk with patients periodically, e.g. at the time of a complete physical, to learn their wishes about EOL care. They should offer information about health status and about the likelihood of future health problems. They can provide literature to encourage patients to complete written advance directives. In addition, notations can be made in charts to record discussions indicating patient preferences about the use or non-use of specific modalities, or about whom they trust to make their medical decisions if they should become unable to do so.
Advance care planning can also be an excellent topic for adult Sunday school classes or Senior Groups in the church or community. Such discussions provide an opportunity to study such relevant biblical concepts as the sanctity of life, the sovereignty of God, suffering, stewardship, and caring for others.
Breaking Bad News
No one likes to either give or receive bad news. In health care, the communication of a poor prognosis can be done poorly, resulting in an alienated patient. Or it can be done well, leading to the establishment (or reaffirmation) of a strong and caring professional relationship.
The primary physician should not delegate this unpleasant task to someone else. He (or she) should first confirm the medical facts. Then the doctor should arrange for a face-to-face meeting, in a comfortable and private place, when there will be adequate time for an unhurried discussion. It is occasionally necessary to deliver bad news over the phone, but this should be avoided when possible. The preliminary arrangements should include thought and/or discussion about who should be present, perhaps by saying to the hospitalized patient, "I will be getting your biopsy results this afternoon and will return after office hours to discuss them with you. Would you like to have your wife (or husband) here when we talk about this?"
It is also a good idea to ask patients how much they want to know. While a large majority of patients want to know exactly what is going on, a few will choose to have the details given to a trusted loved one instead. This is a particularly important consideration when caring for patients from a different culture.
At the meeting, after determining what the patient already knows, the pertinent information should be given clearly and briefly, avoiding jargon, euphemisms, and long monologues. Pause frequently. Check for understanding. Don’t be afraid of silence or tears. Use open body language; reach out and touch if this in part of your interpersonal style. Have tissues handy. Give the patient and others time to react, respond, and ask questions.
You should also be prepared with plans for further management of the illness. Though you do not need to know specific medications or treatment regimens, you need to know if surgery or chemotherapy are options, or what consultants you will call in. And if there is no therapy available to change the course of the disease, this too needs to be discussed. But NEVER, NEVER, NEVER say to the patient, "There is nothing more we can do for you." This may feel to the patient like a devastating statement of abandonment. It is okay to admit, "There is nothing more we can do to halt this disease, but there is much more we can do for you during these next weeks and months."
It is best to avoid precise prognostication. At the same time, you shouldn’t be so non-committal as to be either misleading or useless. If asked "How long do I have?" it is preferable to respond with, "We are talking about months rather than years (or weeks rather than months)."
One of the most important parts of breaking bad news is to schedule a repeat visit soon afterward to review the facts and discuss the future, because communication is not what is said, but what is heard. Many patients hear the word "cancer" or "liver failure" and then hear no more.
Assessment and Goal Setting
When caring for a patient with a life-threatening illness, too many professionals focus only on their own particular area of involvement. But it is imperative for someone, usually the primary physician or the palliative care specialist, to take an inventory of all of the needs of the patient and his or her family. This, of course, includes an assessment of the physical symptoms (see the next section).
Psychological symptoms, such as depression and anxiety, are common in patients confronting death. To address these symptoms, patients often need medication, counseling, human presence, and/or supportive listening.
Whole-person assessment also includes an overview of social factors such as loneliness or unfinished business. Ira Byock, hospice physician and writer, has stated that people who are dying often need to say five things: "I love you"; "Please forgive me"; "I forgive you"; "Thank you"; and, "Good-bye."1
It sometimes helps to ask: "Is there anyone you would like to talk with before you become any sicker?"
People who are dying often wrestle with spiritual issues of guilt, doubt, and the ultimate meaning of life and of death. Professionals and other caregivers should be willing to share their own eternal hope with the patient’s permission, and to pray with or for the patient as appropriate. Depending on the patient’s preferences, you should be ready to arrange for spiritual counsel with someone from his or her own faith tradition. It is also beneficial to have a spiritual concept of "hope," such as that of Victor Havel, Czechoslovakian poet and president: "Hope is not the conviction that something will turn out well, but the certainty that something makes sense, regardless of how it turns out."2
Total assessment also includes practical planning of the following:
- Who will provide bedside care?
- Where will they get the needed supplies?
- How will they fill prescriptions, etc.?
- Are there needs for child care, or child counseling?
- Who will do or oversee household chores or shopping?
- Who will be available by phone to help the bedside caregiver deal with expected or unexpected problems?
- Who will make decisions if the patient loses the capacity to do so? (This should be addressed well before it becomes an issue.)
- Does the family need assistance with insurance benefits and claims?
- Have plans been made for personal or spiritual rituals?
- Who will care for family pets, now and after the patient’s death?
During this discussion and planning it is often helpful to focus on goals rather than on the use or non-use of specific treatment modalities. Is the goal to postpone death? If so, is this still feasible? Or is comfort care a more appropriate goal? Is the patient’s goal to stay at home, or to finish a project, or to attend an event?
Physicians often have a difficult time with the transition from "aggressive" care to comfort care. But excellent EOL care is, in fact, aggressive care with a different goal. And when that goal is clear, it may mean different written orders (stop checking vital signs, etc.) or bending hospital rules (e.g. extending visiting hours or allowing a pet to visit the patient who is dying).
Physicians and nurses caring for patients as they approach death must be experts in treating symptoms. This goes counter to the standard teaching: "We don’t treat symptoms, we treat diseases!" But when the disease is inexorably leading to death, we must focus on what is still important to the patient who lives with many symptoms twenty-four hours each day. This part of medicine is not emphasized in medical training. But it is not rocket science; it can be learned and applied with great benefit to patients and families.
Pain is the most worrisome symptom for patients and families, but it is often treated very poorly—sometimes because the professionals fail to ask, sometimes because patients fear being labeled complainers, or sometimes because they believe pain is inevitable and not controllable. And sometimes either the patient or the professional fears the use of narcotics. But patient pain can be adequately controlled by a well-trained primary physician and nurse 90 percent of the time, and in almost all of the remaining cases, comfort can be achieved with the aid of pain specialists.
Space does not permit a thorough discussion of pain management, but physicians must become familiar with the World Health Organization’s "three-step analgesic ladder," with the pharmacokinetics of opioids, and with eqianalgesic tables for the use of narcotics. For constant pain, they must prescribe constant doses, reserving "prn" dosing for breakthrough pain. Pain prevention is more effective than pain treatment. Oral dosing of analgesics is preferable, but transdermal or buccal dosing can be used to great benefit as well. Side effects of analgesics must be anticipated and treated.
How much analgesic should be used? Enough. What is the maximal daily dose of morphine? There is no milligram limit. The proper dose is the amount which will relieve the pain with acceptable side effects. Concern about respiratory depression from narcotics is greatly exaggerated; pain is a potent stimulus to breathing. If incrementally larger doses of narcotic are needed to relieve pain and this may (exceedingly rarely) suppress respiration, this is ethically permissible under Aquinas’s "Principle of Double Effect" (see below).
But narcotics are not the only drugs for pain. Pain from boney metastases can often be improved with NSAIDs along with narcotics. Neuropathic pain can often be improved with tri-cyclic analgesics. Visceral pain sometimes responds to steroids. And the EOL care team should not overlook the use of other modalities such as physical therapy, relaxation techniques, massage, and human presence.
Non-pain symptoms must also be treated aggressively. Nausea is a horrible symptom, much worse than vomiting; it needs intensive treatment. Constipation is almost universal in immobile patients, especially when on narcotics. Dyspnea is terrifying, and may require supplemental oxygen, thoracentesis, transfusion, or narcotics, depending on its cause. Anorexia, cough, hiccups, dry mouth, secretions, urinary incontinence, insomnia, seizures, delerium, and many more symtoms, all need a thorough assessment, an understanding of pathophysiology, and a knowledge of treatment options.
The Last Hours of Living
While it is often very difficult to predict when a patient will die, it usually becomes clear when he or she is "actively dying," i.e. when the end is within hours or a day or two. This phase is often signaled by increasing weakness, decreased oral intake, decreased perfusion (rapid pulse; cold, mottled extremities; decreased urine output), and neurologic dysfunction. The family’s natural anxiety over these signs can often be lessened by explanation, but is best alleviated by the presence of an experienced and caring caregiver.
Parenteral fluids are generally contraindicated in this final phase, but good mouth care remains obligatory. Since narcotics are cleared through the urine, if the patient’s urine output nearly stops, regular dosing of narcotics should probably be suspended in favor of "prn" dosing.
In this final phase, most patients show progressively diminished function. They become lethargic, obtunded, comatose, and then they die quietly. Family and caregivers should be encouraged to continue to talk quietly to the patient, even when he or she is unresponsive. A few patients entering these final hours become restless, confused, agitated, and tremulous, sometimes with seizures or hallucinations. This less common mode of passage is very difficult for families and usually requires treating the patient with benzodiazepines or neuroleptics.
Families should be carefully instructed not to dial "911" when the patient dies. They should call instead one or more of the professionals who have been providing terminal care. It is often wise to obtain a MedicAlert bracelet with "DNR" on it for hospice patients so that paramedics will provide only comfort measures if the family panics because of a seizure or other unexpected event and does call for emergency assistance.
After the patient dies, our concerns shift entirely to the family. Time should be allowed for viewing, for "good-byes," for touch, for rituals. It is often difficult for the family to watch the mortician close the body bag, so they may want to be out of the room, or the closure may be postponed until the body is in the transport vehicle.
Our caring for the family after a patient’s death should continue into, and sometimes through, their period of grief. This may include phone or personal contact, a note of condolence, a visit at the funeral home, and/or a follow-up visit in the office two or three weeks after the death to answer questions and inquire about the process of their grieving. This requires special sensitivity and special effort, something I addressed in an earlier article in this magazine.3
Our obligation to patients continues when cure is no longer possible. We can effectively minister to patients and families during life-threatening and terminal illness by carefully and expertly attending to their physical, psychological, social, and spiritual needs. This is the responsibility and privilege of any whose goal is to provide whole-person care in Jesus’ name.
1. Byock I. "Beyond Assisted Suicide: The Real Ethics & Principles of End-of-life Care" (oral presentation). Lincoln, NE. April 22, 1999.
2. As quoted: Kovalchik MT "Playing God" as an act of hope. Annals of Internal Medicine 1992; 117 (12):1060.
3. Orr RD. "The Treatment of Death." CMDS Journal, Fall 1990; vol XXI, no. 3:4-8.