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Reverend Wess is an ordained American Baptist minister and a board-certified chaplain.
Address correspondence to Millicent Wess, MDiv, BCC, Director of Pastoral Care and Bereavement Services, Life Choice Hospice, Montgomery Corporate Center, 200 Dryden Rd, Suite 3300, Dresher, PA, 19025.E-mail: millicent{at}lifechoicehospice.com
Cancer is one of the most feared diseases in the world. The fear of this disease contributes to the grief experienced after the diagnosis. The patient, family members, caregivers, and physicians experience this grief, which has many dimensions and can be extremely complicated. Grief is expressed differently by different cultures, and faith can help in dealing with grief, but no one can escape the emotional, psychological, and spiritual pain associated with the grief individuals feel when they suffer a loss. For this reason, it is best to have a holistic approach when caring for those who are grieving to more effectively meet their needs and to bring hope and healing into a very painful experience. Two case presentations illustrate the application of the hospice approach to grieving patients and the complexity of their grief.
| Cancer |
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| Case Scenario 1 |
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After leaving Martin's room, I went to visit the nurse's aid who was still crying. The aid explained to me that Martin is always that way with her and on this day, it just got to the point where she just could no longer take his name-calling.. She felt her job as a nurse's aid was hard enough, but to deal with a patient who was constantly saying hurtful and degrading things to her was "the straw that broke the camel's back". She did not want to take care of Martin anymore, and she was going to ask her supervisor if she could be transferred to another floor. I understood why. Martin was the angriest, meanest patient I had ever encountered as a hospice chaplain, and he was definitely a patient who challenged my ability to remain completely nonjudgmental, something we are taught and required to do as chaplains.
After talking with the nurse's aid, I decided to speak with some other staff members who took care of Martin. It was not long before I noticed a pattern. No one liked Martin. None of the staff wanted to take care of him, and they were not even concerned that he was dying. There was one nurse who had compassion for Martin because she said there was a vulnerability about him that reminded her of an uncle who had recently passed away. My support that day was mostly to the staff as I listened to their feelings of anger, rage, and resentment toward this dying man. I spent time after that reflecting on Martin, his anger, and what may be contributing to his emotional state. I also reflected on my time with the staff that reluctantly took care of Martin—caregivers who did not want to provide care in this particular case.
During my next visit with Martin, I stayed longer even though his attacks were aimed directly at me. I sat there and let him attack me verbally, saying whatever he wanted for as long as he wanted. In between verbal attacks, he pressed his call button for help, but no one responded to his call until I went out to get them. When the nurse's aids came in, they were as brief as possible. It was clear they wanted to do what was necessary for him and exit as soon as possible.
After Martin quieted down and stopped his verbal attacks toward me, I asked if those aids had done something that caused him to act in this insulting manner. "Yes," Martin said. "Those b_ _ _ _ _ s won't take me out for a smoke." Before dealing with the bigger issue here, (not that I even knew what it was at this point), I decided to try to address his immediate wish to go out for a smoke and offered to take him. He wanted to go, but it was time for his breathing treatment, which he desperately needed. I explained to Martin that the hospice certified nursing assistant (CNA) would take him out for a smoke whenever he wanted because one of her roles—and our roles as hospice workers—is to do things with him and for him that would bring joy to his life. I assured Martin that I would let his hospice CNA know about his desire to go outside for a smoke and that the entire hospice team would do whatever we could to make this happen for him every time we visited. Regular visits by the hospice nurse, CNA, social worker, and chaplain would ensure many opportunities for a smoke. I asked Martin if there was anything else he wanted, and he said, "No, I just want to smoke."
Before my second visit ended, I asked Martin if I could see him again and, unable to speak this time because of his breathing treatment, he simply shook his head to indicate "yes." I thanked him for allowing me to come back again and told him I would look forward to our next visit.
On my third visit with Martin, he seemed like a different man. He was less verbal, abusive, and agitated, and more relaxed, but not exactly pleasant. However, he did not look at me as he had on my two previous interactions when he rolled his eyes and turned his face away from me as if to say, "Oh, it's you again." I sat down and began to talk with him; slowly Martin's deeper issues unfolded. After our 4-hour conversation, his emotional and spiritual issues were much clearer to me. Martin was grieving, and there were many aspects to his grief, but they were all related to one thing—his diagnosis of end-stage lung cancer.
| Fear of Cancer and What Its Diagnosis Portends |
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Patients with a cancer diagnosis suffer physically, emotionally, and spiritually. Some distress begins almost immediately after hearing the diagnosis. Not only the patient but also the family members suffer. It is not uncommon for patients and their families to undergo anticipatory grief: the anguish in expectation of what is about to come or what could possibly develop in the next few days, weeks, months, or maybe even years as they battle this disease. Cancer is a disease for which even the most brilliant scientists have yet to find a cure. Cancer is daunting. The word itself can make even the most positive thinker think negative thoughts.
Cancer can be frightening even for persons of faith. I once knew a very religious young woman who would not even utter the "C" word for fear that she would speak it into existence. Her cancer was already present, but unfortunately, she was in such denial about it for so long that by the time she was ready to face reality and acknowledge her diagnosis, it was too late.
The cancer had spread throughout her body, and she died a few weeks later. Some religious people feel, as this young woman did, that if they just pray about their cancer, one day their physicians will say that the cancer has mysteriously and miraculously disappeared. The fact is some patients have been cured, or healed, from cancer, but some have not. We do not know why. I believe most people with a cancer diagnosis hope and pray that they will be one of the lucky ones who are cured, one of the blessed ones who are healed, or at the very least, one whose cancer goes into permanent remission.
Cancer is so frightening that even the possibility of it can cause a person to take drastic measures, as the woman in the following case vignette did.
| Case Scenario 2 |
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Sarah describes this 4-year experience and time in her life as painful, full of anxiety, fear, and grief as she anticipated all the things that could possibly begin to happen to her. Sarah began to think about the future without her in it. She even wondered who her husband would remarry after she died. In other words, this vibrant young woman, with benign but abnormal cells in one of her breasts was thinking about death. During this time of pain, fear, and anxiety, Sarah also felt powerless until one day she realized that she was not helpless
Sarah reached out to one of her friends who was battling cancer. She listened as the woman discussed painful sores in her mouth as a result of chemotherapy, and how friends stopped visiting because they did not know what to say. She talked about how lonely and isolated this made her feel at a time in her life when she needed her friends the most. After listening to her friend's experience, Sarah realized that she still had choices. She no longer feared what the physician would tell her after her next mammogram. She realized that she did not have to continue reacting to what was happening to her, but that she could become proactive and make some decisions for herself—and she did.
Sarah's decision to have a double mastectomy came after testing positive for the breast cancer gene. This decision would be less painful, both emotionally and spiritually in the long run. Sarah no longer lived with the constant fear and anxiety, year after year, awaiting her mammography results.
| What Patients With Cancer Feel |
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Patients with lung cancer who smoke feel shame and regret because they sometimes think that they are responsible for their diagnosis. At times, their caregivers and healthcare professionals may even suggest that they are partly to blame for their unfortunate predicament; when this happens, it can lead to feelings of isolation and loneliness as they begin to grieve.
| Grief |
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Hospice patients whose physicians have given them a prognosis of 6 months or less to live sometimes grieve their own life and all the experiences and relationships that were meaningful to them throughout their existence. Life, death, and grief are the three things that all people have in common. All are born, all must die, and in between birth and death, all will experience some type of grief.
Even though dying and grief are a part of life, individuals as a society are still uncomfortable dealing with death and with those who are grieving as a result of their loss. Therefore, one either avoids persons who are grieving all together, thereby causing the grieving person to feel isolated, or one says inappropriate things because of not knowing what to say.
The way people respond to another person's grief can hurt and hinder or help and heal the grieving person as he or she experiences and works through the grief. It is also important for those who care for the grieving to be sensitive and refrain from using common clichés (Figure 1) that are inappropriate and diminish a person's loss by attempting to explain away their difficult reality with overly simple solutions.
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| Stages of Grief |
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These stages of grief are helpful in defining some of the feelings a person may experience as a result of a loss. However, in my practice as a hospice chaplain giving bereavement support to family members after their loved one has died, I have observed that everyone does not necessarily go through all of these stages nor have all of these feelings. These feelings also do not necessarily come in any particular order, and the length of any particular "stage" or feeling for the grieving person is as unique as the person himself or herself. My experience with people who are grieving suggest that (1) there are many symptoms, feelings, and responses that people can possibly have as a result of a loss; and (2) there are many factors that contribute to and influence their grief.
| Some of the Symptoms, Feelings, and Responses to a Loss |
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| Factors Contributing to and Influencing Grief |
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| Disease-Related Factors That Influence How We Grieve |
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After reflecting for many days and nights about my 4-hour conversation with Martin during our third visit, I assessed that he was grieving. His verbally abusive language and behavior were symptoms of his grief. His grief had many dimensions to it and was complicated. Martin had been smoking for approximately 50 of his 70 years of life, and now was on the hospice service dying of end-stage lung cancer.
His family had emotionally and physically neglected him, the staff at the nursing home had emotionally deserted him and remained as physically separated as they could be considering they still had to provide some care, and even I, the hospice chaplain, had abandoned him on our first visit. When Martin became verbally abusive to me, I ended our short visit by politely telling him that I would come back to visit him another day if that was all right with him. I am to this day grateful that he gave me a second chance to care for him, and I was determined not to ruin this second chance. Life does not always provide second chances.
Martin had been abandoned by almost everyone in his life. His family was angry with him for smoking most of his life, because they believed that his smoking contributed to his getting lung cancer. And, since they thought it was Martin's fault, they punished him by limiting their visits to him. This abandonment by his family left Martin angry, hurt, rejected, and isolated. The nursing home staff thought that it would be irresponsible to allow Martin to continue to smoke since it was smoking, they believed, that put him in the "terminal" shape he was in. What they did not think about, though, was that keeping him from smoking was not going to help him get better. His lung cancer was not going to go away at this stage if he stopped smoking. All the staff did was take away one of the last few things that brought Martin joy at this difficult time in his life—the ability to go outside every once in a while for a smoke. Taking this ability away from Martin made him angry, bitter, resentful, and irritable. It also reminded him every day how dependent he was on others because he could not go outside unless they allowed him to do so. He vented this anger, bitterness, resentment, and irritability through his verbally abusive language and behavior toward his caregivers.
When I, as the hospice chaplain, left Martin after only a few moments during our first visit, he probably felt abandoned not only by me, but also by God, because he was abandoned by one who was "supposed" to be a representative of God. When I, a representative of a loving and accepting higher power, deserted Martin, it may have made him feel unworthy, unloved, unwanted, and devalued; he may have reasoned that if one of God's representatives did not want to be with him, something must be horribly wrong with him.
Martin not only was experiencing grief as a result of his family, the nursing home staff, and my actions, but he was also experiencing personal grief related to his disease. He suffered from feelings of guilt, regret, and shame because, as he confided to me on that third day, "my family hates my guts and they should because I did this to myself." Martin was angry with himself because deep down, he felt responsible for his terminal cancer diagnosis. Because he believed that it was his fault that he had lung cancer, he also felt that he deserved to die and was not worthy of being loved; consequently, he pushed away everyone who tried to care for him. I saw this as a coping mechanism. Martin could no longer be abandoned if he rejected everyone before they had an opportunity to abandon him.
When I sat with Martin and allowed him to lash out at me in a verbally abusive way without judgment or retaliation by walking away, what I hope he heard me saying to him is: I care enough about you and respect you enough as a human being created by God to allow you to feel whatever you feel, say whatever you want to say, and be wherever you are emotionally and spiritually. When I offered to take Martin out for a smoke after realizing that was his desire, and I promised that the hospice team would do its best to take him out for a smoke at every visit, I hope he heard me saying to him that I realized he had already lost so much in his life that it would be cruel and unusual punishment to take away the one remaining thing that brought him joy—a smoke.
On my third visit with Martin (during the short span of 4 hours), I made a real connection with him. Once during a long period of silence, he asked me why I was still there with him, how come I had not left him like everyone else did? My response was simple, "Because you allow me to be here and I don't take that for granted because you could throw me out." When I spoke these words to Martin, I hope he heard me acknowledging his rights and autonomy as a valuable human being. He died about a week after my third visit. I am happy to say that our hospice team afforded him many opportunities to go out for a smoke before he took his last breath. As this case study demonstrates, a person's grief can be complex and complicated with many layers and dimensions. For this reason, physicians and other healthcare workers need to be aware of many factors that may influence and contribute to grief so they can help the grieving patient and family members.
| How Physicians Can Help Grieving Patients and Family Members: |
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Spirituality (seeking connection through something or someone greater than yourself to find meaning and purpose in one's life) may become even more important during times of crisis, such as a serious illness. A medical condition such as cancer may challenge personal beliefs and cause a great deal of distress. Patients may suffer a loss of faith and a feeling of hopelessness after being having a terminal illness diagnosed. Getting in touch with their spirituality may help patients cope more effectively with the psychological and emotional effects of cancer. Researchers have found a striking correlation between good spiritual health and good physical health.9 Spiritual well-being may improve the quality of life in patients by:
| How Physicians Can Best Help Themselves Through the Grieving Process |
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In medical school, physicians are taught to save lives. In life, they are taught that is not always possible. In medical school, osteopathic physicians are taught to treat patients for illnesses and, when possible, provide a cure. In medical practice, they provide therapy to some patients whose disease cannot be cured. In medical school, they are taught to heal physically. In life, they directly learn that healing does not always occur physically but may take place emotionally and spiritually. That is the full story of life: everything born must eventually die.
When patients die, some physicians take it as a personal loss and feel that they failed to do something better or did something wrong. These feelings can become destructive as they search for answers to different questions, some of which have no comforting answers. "What could I have done differently?" "What could I have done better?" "What didn't I learn in medical school?" "If only I had tried this alternative, maybe things would have turned out differently for this patient?" "Because I couldn't save them, I have contributed to their death and their family's pain and misfortune." These beliefs can lead to feelings of inadequacy and failure.
Seeing how some physicians respond to the death of a patient has led me to believe that in many ways the medical schools may have let them down. Society has also failed physicians by projecting the notion that the power of life and death is in their frail and fragile human hands instead of in the hands of a transcendent creator. The healthcare profession has failed them by encouraging this unhealthy behavior. Patients and their family members continue this unfortunate process by placing more on physicians than is humanly possible for them to handle. For these reasons, physicians may often suffer substantial grief that often goes unnoticed.
Physicians may grieve their limitations. At some point in their career, physicians realize that they cannot save, help, or cure everyone even though some patients and families are expecting them to do so.
Physicians may grieve because of feelings of guilt. These feelings occur when physicians cannot accept their limitations as human beings, feelings that then lead them to the belief that they could have and should have done more. Questioning themselves and having feelings of guilt can lead to a mindset of inadequacy and isolation as they struggle to find meaning in a healing profession that cannot always heal.
Physicians can help themselves as they grieve when they can accept their true reality, not a false reality imposed on them by medical schools, society, the healthcare profession, and those patients and families who come to them for care. They can help themselves when they accept death as a natural part of life as opposed to something that they could not prevent.
Physicians can also help themselves by setting boundaries. These restrictions include preventing patient and family members from having expectations greater than is humanly possible to achieve.
Physicians can help themselves by accepting, appreciating, and embracing their limitations. When physicians recognize that they cannot do all and be all that people want them to do and be, they will reduce their burden by putting it where it belongs: on patients and their family members as individuals responsible for their own emotional and spiritual well-being as they cope with life's ups and downs.
Physicians can help themselves by seeking and getting help from other professionals when they need it. It is unrealistic to think that physicians can go through their entire careers without ever seeking the support of a therapist, grief counselor, or related healthcare professional.
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I have learned a great lesson during my time as a chaplain who also offers bereavement support: The best care is provided when it comes from an interdisciplinary team comprising healthcare and other professionals who are qualified to address each dimension of hurt a person will experience. As healthcare professionals caring for those in pain—physical, emotional, and spiritual—we are much more effective as a team than we could ever be alone.
| References |
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2. Kübler Ross E. On Death and Dying. New York, NY: Macmillan; 1969.
3. http://www.elisabethKublerross.com.
5. Wolfelt AD. Understanding Grief: Helping Yourself Heal. Muncie, Ind: Accelerated Development Publishers;1992 : 18-42.
6. Rando TA. Treatment of Complicated Mourning. Champaign, Ill: Research Press;1993 .
7. Doka KJ. Living with Life-Threatening Illness: A Guide for Patients, Their Families & Caregivers. San Francisco, Calif: Jossey-Bass Publishers; 1993:61 -65.
8. Koenig HG. Spirituality in Patient Care: Why, How, When, and What. Radnor, Pa: Templeton Foundation Press;2002 : 6.
9. Spirituality in Cancer Care. Available at: http://www.cancercenter.com/complementary-alternative-medicine/spiritual-support.cfm. Accessed December 7, 2007.
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