|
Advertisement |
|
|
||
 |
|
|||||
|
|||||
|
 |
||||||
|
||||||
|
||||||
|
© 2000 American Society for Clinical Oncology
Caring for Dying Patients: What Is Right?From the Springfield Clinic, Springfield, IL. Address reprint requests to Mary Bretscher, MD, Springfield Clinic, 1025 South 7th St, Springfield, IL 62794; email bretscher.mary@ mhsil.com. MR. JONES, A 73-year-old man with diabetes and coronary artery disease, presented with dyspnea, which led to a diagnosis of stage IIIB non–small-cell lung cancer. While being treated with concurrent chemotherapy and radiation, he developed progressive weakness and dysphagia. His dyspnea did not improve, and he was too ill for more curative-intent treatment at the time. He was discharged home with plans to consider further treatment when he recovered. He did no better at home and would not drink his nutritional supplements. He was admitted to the hospital, and a nasojejunal feeding tube was placed. His dyspnea worsened, and a chest x-ray showed a new right lower lobe pneumonia. He was started on antibiotics and oxygen. He became progressively more hypoxemic, and the nurse reported that he was "tiring out." The covering intern on call that night, who had never met the patient or family, talked with the patient’s wife, who agreed to a do-not-resuscitate status. The patient developed significant respiratory distress, and the nurse requested morphine for relief of the dyspnea, but the resident was reluctant to prescribe it. The patient’s daughter, who lived in another state, then arrived and demanded that "everything" be done for her father. An emergent ethics consult meeting was called, during which it was determined that the patient had no living will or durable power of attorney for health care. After much discussion, all parties eventually agreed to a no-code status, and the patient died. If we were to ask the participants in this all-too-familiar drama to tell us how they felt, we might hear the following responses: Wife: "I shouldn’t have let him go through all that. He never wanted it." Daughter: "If I didn’t make sure they did everything for dad, I couldn’t live with myself." Doctor: "If I had known what the outcome was going to be, I would have done things differently." Patient: " The doctors don’t say it, but I think I’m dying." This case should strike us not as an exception or as unusual, but rather as fairly representative of the care of many patients in this country who have a life-threatening illness. There was no negligence and no bad intention. Each decision along the way was made with a genuine desire to do the right thing for the patient. Yet the end result was a dying process characterized by iatrogenic suffering, feelings of helplessness on the part of the family, and a lack of candid communication between doctor and patient that may have deprived the patient of "the gifts of last days." This drama, or a related version of it, has been playing itself out over and over in health care systems across the country. For a long time, many people both inside and outside the medical system have had a sense that there is something wrong with the way we care for dying patients. Inevitable sadness naturally accompanies death and loss; it touches caregivers as well as families. But there is also a sense that the process itself is wrong. Too often our health care system fails as it shepherds a person through a life-threatening illness. Many perceive that our system contributes to suffering rather than alleviating it. Sometimes it seems that a "good death," however one defines it, is the exception rather than the rule. Studies of persons with life-threatening illnesses, their family members, and professional caregivers have shown that there are four major groups to consider: the patient, the patient’s personal and family caregivers, the bereaved, and the professional caregiver.1 Persons With Life-Threatening Illness These patients focused on living rather than dying and found "wellness" in nonphysical realms. At times, they were able to view their illness as an opportunity for growth and healing. They found that their questions about death were ignored and invalidated by physicians. They feared losing the capacity to care for themselves and becoming dependent. They wanted their families included in their care, and they wanted to remain "in the arms of the community." Their message to caregivers: "Help me live meaningfully." Personal and Family Caregivers Caregivers felt that the illness was very much "their" illness too, affecting them as well as the patient. They sought respect from professionals regarding their expertise in caring for their loved ones. They felt the burden of caregiving. They spoke of isolation, lack of help, the need to balance multiple roles, time constraints, and lack of sleep. They wanted help without having to ask for it. On the positive side, their caregiving was viewed as a way to integrate the dying person into family life and to respect the last phase of life. Caregiving was a source of satisfaction for the caregivers. Bereaved Persons The suffering of bereaved persons is often protracted and complicated; there is no point at which one can say one is "over it." The last days of the patient’s life are full of opportunity for growth and healing, but the family needs forewarning and guidance to make the most of this time. Bereaved persons need friends to simply "be with" them, without an agenda. Reintegration takes time and does not mean the loss is forgotten. The sorrow is a bittersweet possession never to be lost. Professional Caregivers Professional caregivers found that productivity quotas and the reimbursable aspects of care are emphasized, in the workplace, interfering with their ability to assess and respond to the actual needs of patients and families. They acknowledged a lack of training in end-of-life care, which resulted in feelings of inadequacy when dealing with dying patients and their families and led to emotional withdrawal, self-destructive coping mechanisms, and denial. One telling quote: "Thank God we don’t have time to bond with families anymore." Clinicians are concerned about the long-term effects of insensitive care on their own health and well-being. Their remarks reveal that the desire to provide truly supportive care and the marketplace’s demands for productivity are nearly irreconcilable. How do we integrate the needs of the dying, the survivors, and the medical community? Life-threatening illness is more than just a medical event. It is a process that demands partnership between all parties rather than simply a medical course of treatment. It is important for physicians to remember that patients and families may have spiritual and social needs that require the help of clergy and/or other professionals. Ira Byock, MD, expands upon this relationship between the person, the community, and the health care system: Of the fundamental needs of persons as they die, only the need to control physical symptoms is uniquely medical. Their more basic needs are broader than the scope of medicine. They need shelter from the elements, a place to be. They need help with personal hygiene and assistance with elimination. They need nourishment or, as death comes closer, sips of fluid to moisten their mouth and throat. They need companionship, and they need others to recognize their continued existence. In recognizing these needs, we can say to the dying person with our words and, more importantly, with our actions "We will keep you warm and we will keep you dry. We will keep you clean. We will help you with elimination, with your bowels and your bladder function. We will always offer you food and fluid. "We will be with you. We will bear witness to your pain and your sorrows, your disappointments and your triumphs; we will listen to the stories of your life and will remember the story of your passing."2 Unlike other fields of medicine, it is often difficult to know when end-of-life care has been successful. Traditional measurements of the effectiveness of oncologic treatment, ie, response rates and survival duration, do not apply. Byock has identified five things that patients and families should, in some way, say to one another in the dying process: "Forgive me," "I forgive you," "Thank you," "I love you," and "Good-bye." When health care can facilitate this kind of meaningful life closure, it will have been a success. It starts with a factual discussion among physician, patient, and family about what the future holds. That’s medical, and we can do it. REFERENCES 1. Living and healing during life-threatening illness. Executive Summary, Supportive Care of the Dying: A Coalition for Compassionate Care, Portland, OR, June 1997 2. Byock I: Dying Well: The Prospect for Growth at the End of Life. East Rutherford, NJ, Putnam-Riverhead, 1997 Submitted September 10, 1999; accepted October 19, 1999. This article has been cited by other articles:
|
|||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
|
|
|||||||||||
|
|||||||||||
|
|
Copyright © 2000 by the American Society of Clinical Oncology, Online ISSN: 1527-7755. Print ISSN: 0732-183X
|
