The Two Standards of End-of-Life Care in British Columbia

Transcription

1 Submission to the Conversation on Health: The Two Standards of End-of-Life Care in British Columbia Submitted by: Romayne Gallagher MD, CCFP Head, Division of Residential Care Department of Family and Community Medicine, Providence Health Care And Elizabeth Drance MD, FRCPC Physician Program Director, Elder Care Program Providence Health Care

2 Executive Summary The costs of healthcare in the last year of life have always been high. Recommendations to deal with this have been around since the late 1970s. While many of the suggestions have been acted on there remain a number of ongoing challenges such as the unpredictability of prognosis, the increasing ability of medical science to prolong living and dying, as well as cost pressures, public expectations and others. Increasingly the oldest of the old are dying in residential care. They die from less predictable illnesses that do not fit the current model of hospice care or acute care. A comparison of the daily costs per person in hospice versus residential care shows that hospice has over $100 per day/per person more than residential care to provide end-of-life care. The Provincial Framework for End of Life Care outlines that residential care should be supplemented so that the same quality of end-of-life care is available across the system. Two supplementary programs were developed, but one has never applied equally to all residential care homes and the other is under funded and often used to meet the demands of policies to ensure patient flow in acute care. There are a number of specific suggestions made to correct disparities and improve access to end of life services.

3 Topic and Explanation The Conversation on Health emphasizes that more healthcare resources are consumed as we age. As the website notes, the cost of health care for a person is $5,224 annually and by the time a person reaches 85 or older the cost is $20,878. It is emphasized that the population of people over 65 will balloon from 14% to 24% by This large change in the costs as one ages, in part reflects the costs involved in the process of dying. Many papers have been written on how the highest costs for a person are generally in the last year of life. Of course, because more people die as their age increases, the average cost of annual health care concomitantly increases. This is not a new phenomenon as health economists, governments and ethicists have wrestled with this issue since the 1960s. A research study from 1984 (Scitovsky) reviewed costs of care back to the 1960s and noted that the cost of dying has been high since that decade. What they routinely found was that the cost of dying from an illness was higher than surviving an illness, particularly in acute care. The author concludes that after review of costs it was not possible to conclude that excess resources were spent on those who would die anyways. This study refers to another article from 1977 that is still highly relevant today. Dr. A. Leaf, the author, notes in our acute-care hospitals, where the elderly are brought frequently with advanced disease, they are too often subjected indiscriminately to the same management that might offer hope of benefiting a younger person with less extensive disease. When such procedures are applied to the fragile or debilitated elderly the morbidity, or even the mortality, may be high. Dr. Leaf made a number of recommendations: teach geriatric medicine in medical schools more clinical trials and evaluations of diagnostic and therapeutic procedures as applied to the elderly ethics committees to help physicians, patients, and their families with difficult treatment decisions; more alternatives than the present choice between the acute care hospital and no care; education of public and the medical profession to create more realistic expectations regarding what medicine today has to offer the elderly. Many of these recommendations have been implemented. We have both geriatric specialists, who have the latest knowledge on management of illness in older adults, and ethics committees. We do have more clinical trials and evaluations of diagnostic and therapeutic procedures in older adults but one of our greatest challenges relates to our constant redefinition of older adults. The fastest growing segment of our

4 population is also the oldest. This is due to medical advances and preventive strategies, all of which are supported by this government in the discussion paper Healthy Aging through Healthy Living written in People are definitely living a greater number of disability-free years and that is excellent for all of us. However, an interesting health economics study (Lubitz et al NEJM 2003) looked at the health care costs from age 70 until death and compared it to people s selfreported health at age 70. Those who rated themselves as in excellent health and those who rated themselves in poor health cost the same amount of money, but it was spent in differing areas of the health care system. Again it confirmed that the greatest amount of money was spent when the person was in poor health i.e. in their last year of life. This was done with 1998 figures. Our system has also evolved alternatives to acute care for those needing chronic ongoing care. We have increasing numbers of hospices home-like small care facilities that provide end-of-life care for those who are estimated to live 2 to 3 months or less. For those who require care for a longer time, we have residential care previously called nursing homes. Increasingly the people in residential care are those with multiple non-cancer illnesses such as chronic heart, lung and kidney disease, and diabetes as well as the neurodegenerative diseases such as Alzheimer s Disease, Vascular dementia and Parkinson s Disease. This is because these diseases are more common in older adults and also because the incidence of cancer declines after age 80. As well, most of the people living residential care experience numerous comorbid conditions, which create significant fragility and increasing disability over time.. They are often the oldest of the old and require residential care for many of their last months and possibly years of life. In the last ten years there has been a significant change in the length of stay for people living in residential care. People used to move into intermediate care facilities when they could still carry out some of their activities of daily living such as dressing, walking to and from activities and eating independently. When they required more intensive support for these activities, they were moved to extended care where they received full support with all daily activities such as feeding, dressing and toileting. Intermediate care has all but vanished for two major reasons. First older people are living with fewer disabilities as they age. Older people are living healthier by virtue of better prevention strategies, and better early intervention with illness. However when people do become seriously ill, we are also able to help them to survive more acute bouts of illness. Medical advances have made it possible to prevent people from dying with major illnesses such as stroke, heart attack or infection, but this does lead to more frail survivors, who are living with the chronic consequences of the initial illness that would have killed them previously. Medical advances have also made it possible to prevent death to the point of

5 where it is often debatable whether the intervention is doing anything but prolonging the dying process. The other reason for intermediate care s disappearance is a change in the philosophy or health care and the desire for people to remain in their own homes as long as possible.. Home care services are provided by healthcare agencies in the community and or by family, friends and neighbors. Assisted Living provides support for elders wanting to live in congregate settings, but these people must be able to direct their own care and thus are quite independent. For these reasons, the people who now come to live in residential care are truly complex, meaning they have multiple illnesses and require round the clock care. The number of people dying in residential care has increased dramatically as more people stay shorter periods in residential care. In 2001, 19.7% of deaths in BC were in residential care. Four years later, in 2005, 28.6% of deaths in BC occurred in residential care. This is occurring for a number of reasons. The most obvious one is that we are only taking people in residential care who are quite sick and in their last year, or often months, of their life. They stay a short time, die and then are replaced by someone else who is also close to death. While some of this increase may be due to some health authorities incorporating hospices into residential care, by far the bulk of the increase is due to more complex care elders dying in their home. The other reason is that again there is a push to control health care costs by reducing the length of stay in acute care hospitals. In that same time period, the BC deaths occurring in acute care hospital dropped from 63.3% to 53.3%. Interestingly deaths at home which include hospices did not increase over that time period. What is missing from Leaf s list is get better at predicting when someone is going to die. Not that this has not been worked on multiple studies have looked at symptoms, lab tests and other human markers that would give us a better idea of the person s prognosis. Having better prognosis skills would help us avoid investigations and treatments that do not add to the persons well being saving health care dollars. It would also better help us to plan effective care for that person. However, we need to be able to communicate this kindly and effectively so that patients and families understand and accept. This is the art and of healthcare, which is often, the time for which is poorly appreciated and under funded.. Cancer tends to be an illness that is more predictable than advanced heart, lung, kidney or neurodegenerative diseases. People tend to require round the clock care only in the last two to three months of life. The path of decline is more consistent which makes it easier to do advanced care planning. Non-cancer illnesses are much less predictable. A study of people with advanced heart failure looked at the ability to predict when a person was going to die. A person three days away from their death still had a 54% chance of living 6 more

6 months. This unpredictability is also true for non-cancer chronic lung disease and kidney disease. Neurodegenerative diseases are also very unpredictable as are patients with multiple comorbidities the frail older adults living in our residential care homes. Because of the difficulty in predicting when someone is going to die with noncancer illness they tend to lose out on palliative care services. This is because many healthcare providers see palliative care as something for the last weeks or few months of life. Since they do not know when these people will die, and are reluctant to predict and be wrong, they hesitate to involve palliative care. The public s perception is also that palliative care is only for the actively dying and therefore tends to avoid accessing services in a timely manner. In our current system we tend to refer those with cancer to hospice and those with non-cancer illnesses and particularly those with dementia to residential care. This is primarily because of the predictability of the disease. Hospice wants people who have an estimated length of life of 2 to 3 months and residential care does not have an average length of stay requirement. Naturally we all try to avoid sending someone to a new place just before his or her death something that is that disruptive and difficult for everyone. However, both with the unpredictability of death, and the pressures in our acute care system, this regrettably still happens. What are the differences in health care costs per day between residential care and hospice? It is always a challenge to actually come up with the daily cost as the costing of services to individuals is generally not done in a system that tends to run on global budgets for salaries, medications and capital costs. However, looking at the cost of some hospices it is estimated that the cost per patient per day in hospice is around $300 to $350 per day. This includes an approximate charge of $30 per day paid by the patient and donations that are given to the hospice. In residential care, there is also a daily cost of about $30 paid by the resident but the residential care beds in Vancouver Coastal Health Authority function on an average daily cost per resident of $165 per day, including the money paid by the resident. While, this does not include donations to residential care, these are a minimal source of income. The Ministry of Health Services recognizes that residential care beds get less funding than acute care and hospice beds. In the Provincial Framework for Endof-Life Care where it discusses providing palliative care in residential care the Framework notes: The regular services available in residential care facilities need to be supplemented, as necessary, to make it possible for quality end-of-life services to be provided to residents who do not need the intensive diagnostic and surgical/medical interventions only available in acute care hospitals.

7 The Framework lists the services that people in residential care should have pain and symptom management, psychosocial support, specialist support and back up, access to specialized medication and equipment similar to those participating in the palliative care benefits program. Currently one of the most glaring differences between hospices and residential care is that all hospices have access to the palliative care benefits program and not all residential care facilities do. This means that if special medications or equipment are needed for someone who is dying then that must be applied against the global budget of the facility. How tempting it must be as a facility manager to send these patients to acute care when they get complex symptoms as their costs will disappear and the patient will be happy because in acute care they do not have to pay for daily care. To try to add services for residential care, the Ministry developed a program called Added Care. This allows residential care managers to request extra staff for a patient who may be near the end of life and needs more assistance and companionship. However, other pressures on the system have conspired to the point that this program is used rarely for patients at the end of their life. Added Care is used for people with dementia who have marked behavioral challenges and are waiting for a place in a special care unit or for older adults who are awaiting transfer to geriatric psychiatry units. These elders have care demands that also outstrip the care levels provided in regular residential care settings. Many times these elders are at risk for harming themselves or others in general residential care and Added Care is being used for safety reasons while they wait for an appropriate bed to become available. In reality we end up with two standards of end of life care in British Columbia: The younger patients without cognitive impairment and with cancer die in a hospice. The hospice has higher staffing levels and operates on a larger per diem rate so there are more services and people available to maintain quality of life. The older patients with cognitive impairment and multiple non-cancer illnesses die in residential care which has at least $100 per resident per day less to provide what should be the same care. The staff valiantly tries but it is not possible given the differences in funding. According to the Provincial Framework for End of Life Care in British Columbia, the principle of accessibility states that: Appropriate services should be available where people live or, if this is not feasible, as close as possible to where they live, in the setting that is preferred by the person and their family and in a timely manner. Regardless of their particular

8 disease, end-of-life services should be available to all people who want them, including children and younger adults. If all the patients and families currently dying in residential care were to understand that there were higher staffing levels and more services available in hospice, and were to prefer this option we would have many more requests for transfer to hospice from residential care. It would then be clear that this option is not available. It is also not the answer to the issue. Many residents and families develop loving and therapeutic relationships and these are extremely valuable and should be supported. Many families choose for their loved one to remain in residential care even though they realize there are fewer resources. We need to bring these resources to residential care so that access to services is equitable. Solutions There are several changes that would improve the situation: Pharmacare must give all patients no matter what facility they are in access to the Palliative Care Benefits Program. This would eliminate the need for facilities that do not have access the need to use their global funding to provide adequate pain and symptom management for their patients. It may reduce the transfer of patients from residential care to acute care. This has been requested of the Ministry since 2001 when the program was first started. Revisit the Added Care program to separate the requests for added care due to behavioral challenges or short-term medical morbidity, and end-oflife care. Providing separate and adequate funding for end of life care within facilities. The ministry should provide the same funding per elder to all facilities as almost all facilities now have complex patients. This disparity needs to be corrected if facilities are going to provide adequate end-of-life care. It is not possible to define who is palliative in a facility and add funding in the last few months because of disease unpredictability and because almost all of these people are in the last months of their life anyways. Once these changes are made then an assessment of access to specialized palliative services in residential care needs to occur. It is extremely variable across the province. Specialized palliative care services are teams that can work with residential care health care providers to manage symptoms and improve the quality of life of those with a chronic unpredictable illness. In addition to access, we need to follow through with outcome scales that not only measure where the person died but the quality of their dying: were his or her pain and shortness of breath controlled?; was the patient and family made aware of all they wanted to know about the illness?; was psychological support provided

9 to the patient and family through this time?; was grief support offered to the remaining family and friends? Health authorities have been asked to reduce deaths in acute care by a modest amount and to report on certain indicators. The Provincial Framework mentions quality indicators developed by the Canadian Council on Health Services Accreditation specifically for end of life care but the health authorities are not asked to report on these measures. Currently, none of the measures in place will adequately capture the quality of end-of-life care provided to British Columbians in residential care. Our oldest of the old in our society are not being served well by the current system. The Provincial Framework for End-of-Life Care promises adequate endof-life care in residential care but does not give the health authorities adequate resources to do this. Our older adults with dementia and frailty are some of the most vulnerable people in our society. How we treat them says a lot about what our society values. With our current state of residential care they are clearly second-class citizens. References: Scitovsky A. The Milbank Quarterly, Vol. 83, No. 4, 2005 pp Reprinted from 1984 Levitz J, Cai L, Kramarow E, Lentzner H. Health, Life Expectancy, and health care spending among the elderly. New England Journal of Medicine 2003; 349(11): A Provincial Framework for End-of-Life Care. Ministry of Health Services BC Conversation on Health Vital Statistics Death Statistics