Sick To Death > Chapter 5 > Trajectories Form a Basis for Achievable Excellence
Use of the three illness trajectories (described in chapter 2) as a frame work simplifies and organizes the task of tailoring services to fit the patient population. The next sections characterize the priority elements of clinical services for persons living through each trajectory and give sample cases illuminating the contrast between current patterns and what could be the standard of excellent care.
The Main Street Church support group for advanced cancer patients meets every week, and this week, like many others, the conversation turns to the reality and the fear of pain. AB has a doctor who would not give anything very strong yet, "because you'll need those strong drugs later." Only when she got her granddaughter, a nurse, to help her change doctors did she get comfortable enough even to come to the support group meetings. CD had a problem getting a pharmacy to fill his prescription, and none would deliver it to his part of town: "Too dangerous." EF had just come home from the hospital where he had been in terrible pain for days while the house staff and attending physician made adjustments in his medications on morning rounds each day. It took a week before he got comfortable enough to sleep or eat. GH was not at the meeting, being "too exhausted from not sleeping," since she moved into a nursing home, because she could not take her medications when she wanted them. The social worker coordinating the support group helped participants deal with their anger and frustration. However, a family member pointed out that "you can't get mad at the doctor or you'll never get anything done."
The Main Street Church support group for advanced cancer patients meets every week, and usually the topic is about family concerns and spiritual issues. AB mentioned that her mother was scared that AB would be left miserable when she went to the local university hospital for a special treatment, because her aunt had had that experience ten years ago. Her mother was delighted to find that things had changed and the care was excellent, right down to asking about comfort and ensuring it. CD reflected on the conversation with his doctor about his fears that pain might "get out of hand" as his cancer got worse, but his doctor was able to reassure him that pain would never be overwhelming, using data from the regional cancer alliance interviews with patients and family members about their experiences. EF and GH moved the conversation along to other topics, because there is just not much to say about pain when everyone is confident that it will never be allowed to be overwhelming.
Adapted with permission from Institute of Medicine. 2003. Priority areas for national action: transforming health care quality. Committee on Identifying Priority Areas for Quality Improvement, Institute of Medicine. Adams K, Corrigan J, eds. Washington, DC: National Academies Press, p. 82.
A highly reliable care system for the usual cancer trajectory would:
How could we organize to accomplish these ends? In this case, hospice is a natural answer. The weeks to months of dramatic losses in function, weight, and comfort call for the interdisciplinary teams, continuity, family support, and preparations for death that mark hospice. Integration of hospice with comprehensive cancer care (see the case study describing the Ireland Cancer Center, in chapter 3) would get these services started early enough to support patients and families throughout the course. The key providers would probably be oncologists, cancer centers, and hospice programs, with additional support from nursing homes, home-care providers, and assisted-living facilities. Perhaps comprehensive cancer centers and hospice programs could take responsibility for ensuring that hospice care at home and in nursing homes is reliably available, of good quality, and regularly used with smooth, error-free transfers.
Mr. CV lived with his wife in a small duplex, and their son lived nearby. As Mr. CV became more disabled with heart attacks and progressive heart failure, his living arrangements became more constrained. They moved his bed to the living room, built a long ramp to the door, and changed the family diet to avoid salt. Nevertheless, he would go into an episode of "failure" every few months and would be rushed to the hospital by the emergency ambulance, struggling to breathe. His wife lived in terror of these episodes and just shook and trembled for days afterward. She had lived through breast cancer and a stroke herself, and she worried all the time about what would happen to him if she died first, and what would happen to her if he died first! Their assets had been spent, and they routinely skimped on their prescription medications, since otherwise they could not meet the rent and food bills. Their son helped out by keeping the place repaired, but he worked as a clerk in a convenience store and did not really have funds to help.
Every time Mr. CV was hospitalized, he had a different set of doctors. They never even seemed to have the medical record. Between hospitalizations, he was scheduled for a follow-up visit in "resident's clinic," but he did not usually go, since it cost so much to get the taxis and seemed to do very little good. He did not understand his medications, did not weigh himself, did not know what to do if he was starting to get short of breath, and did not have any conversations with any physicians that implied that this condition would eventually take his life.
Mr. CV and his wife were enrolled in a complex care-management program that ensured that they had good medical services and help with financial planning, family support, and advance care planning. They both came to understand how to manage medicines and weight, and what extra medications to take at the earliest signs of trouble. He had only two more hospitalizations, one for prostate trouble and one for heart failure brought on by a bad cold with a fever. As his condition worsened, nurses also came to see him at home. As planned, he died at home, and the same care team continued to support his wife with the health and living challenges she faced.
Adapted with permission from Institute of Medicine. 2003. Priority areas for national action: transforming health care quality. Committee on Identifying Priority Areas for Quality Improvement, Institute of Medicine. Adams K, Corrigan J, eds. Washington, DC: National Academies Press, p. 63.
A highly reliable care system for the person with an advanced chronic organ system failure trajectory would focus first on:
In good care for advanced organ system failure, prevention and early treatment of exacerbations alleviate suffering, reduce costs, and delay death. The major service providers would be nurses with advanced training who are familiar with the medications and physiology and who can call on other professionals from an interdisciplinary team as needed, such as medical specialists, social workers, pastoral counselors, and occupational therapists. When patients want to forego or stop aggressive life support, aggressive symptom relief must be reliably available (National Coalition for Health Care and Institute for Healthcare Improvement 2000; Brumley, Enguidanos, and Cherin 2003; Lynn, Schall, et al. 2000; Lynn and Goldstein 2003; Quill and Byock2000).
KL, now eighty-nine, has had a rough few years. Her son would say it all started with a fall at home, which broke her hip. She has never been "able to manage things" since the surgery on her hip. She had to give up her little house and move in with her son and daughter-in-law. Even so, she could not get around when they were out and spent many days just sitting in bed or in a chair. She actually had been having memory problems before the fall, and now she cannot remember her family or her name, though she is still able to feed herself. She is incontinent but won't wear diapers, so the family does a lot of laundry. Every few months, something seems to go awry and she ends up in the hospital - for pneumonia, bowel blockage, confusion, or whatever. Each time she comes home, KL has a new set of medications and problems. Last time it was a pressure sore over her tailbone from sitting on a bedpan too long. Her son and his wife, now old enough for Medicare themselves, are weary of the physical labor involved in her care and feel their own health and life slipping away. Yet they don't want to send her to the Medicaid-accepting nursing home, which is miles away from them and anyone else she knows. Her doctors see KL in their offices, trips that require all-day efforts from the family. She has some home health visits occasionally for one thing or another, but none are regular enough to feel like reliable help, and none attend to the family's concerns or issues of environmental safety. She has no advance care plans, not even a decision between her son and her doctor about whether she should undergo resuscitation.
The doctor and elder-care nurse noticed that KL and her family needed some extra attention a few years ago, when she first came to clinic bruised from falling in her garden. Since then, she has mostly had doctor visits at home, even having her blood drawn and her X-rays taken there. She did make a planned move from her little home into the shelter of her son's home, but they get regular respite care so that family members can attend to their own needs and take trips. Her mind is failing, but the physical arrangements have been modified to keep her safe and to make her care easier on the family. She got the bathroom bars and bedside commode she needed right away, the home environment is as safe as possible, and a call-in device functions as an alarm to summon help. She and her family made plans early as to how she should live out the end of life. Those plans include a decision not to have 911 transport to the hospital, but to have an in-home emergency geriatrics team come for any urgent situation. They agreed on no resuscitation. Indeed, before she became too confused to do so, she even picked out the hymns she wants to have sung at her funeral and made arrangements for all the details she could. She is comfortable. Her family is doing a lot of work, but everyone says it is fairly meaningful and important, and all expect her to live this way until a major complication arises and leads to death.
The dementia and frailty trajectory requires further adaptation of the service array. For these patients, a primary focus must be on supporting family caregivers and providing concrete services on an everyday basis. Day-care centers, home health aides, Meals on Wheels, legal aid, family respite, behavioral management, and nursing homes are at the heart of the service array. While cancer patients might be very sick for a year, and organ system failure patients could be sick, off and on, for a few years, dementia and frailty patients can often live for a decade with increasing symptoms and increasing disability. Thus, the care system must accommodate very long durations of progressive illness and adapt to changing family situations, slow decline in the patients' capabilities, and either a sudden or lingering death.