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End-of-life care is health care provided in the time leading up to a person's death. End-of-life care can be provided in the hours, days, or months before a person dies and encompasses care and support for a person's mental and emotional needs, physical comfort, spiritual needs, and practical tasks.
End-of-life care is most commonly provided at home, in the hospital, or in a long-term care facility with care being provided by family members, nurses, social workers, physicians, and other support staff. Facilities may also have Palliative care or hospice care teams that will provide end-of-life care services. Decisions about end-of-life care are often informed by medical, financial and ethical considerations.
In most developed countries, medical spending on people in the last twelve months of life makes up roughly 10% of total aggregate medical spending, while those in the last three years of life can cost up to 25%.
It is typically a continual process, with ongoing discussions about a patient's current prognosis and conditions as well as conversations about medical dilemmas and options. A person will typically have these conversations with their doctor and ultimately record their preferences in an advance healthcare directive. An advance healthcare directive is a legal document that either documents a person's decisions about desired treatment or indicates who a person has entrusted to make their care decisions for them. The two main types of advanced directives are a living will and durable power of attorney for healthcare. A living will includes a person's decisions regarding their future care, a majority of which address resuscitation and life support but may also delve into a patient's preferences regarding hospitalization, pain control, and specific treatments that they may undergo in the future. The living will will typically take effect when a patient is terminally ill with low chances of recovery. A durable power of attorney for healthcare allows a person to appoint another individual to make healthcare decisions for them under a specified set of circumstances. Combined directives, such as the "Five Wishes", that include components of both the living will and durable power of attorney for healthcare, are being increasingly utilized.
Advanced care planning often includes preferences for CPR initiation, nutrition (tube feeding), as well as decisions about the use of machines to keep a person breathing, or support their heart or kidneys. Advanced care planning can be a complex and intimidating change for the patient. Often, when the patient must make a significant change, they will undergo the five stages of change. This theory includes: precontemplation, contemplation, preparation, action, and maintenance. Many studies have reported benefits to patients who complete advanced care planning, specifically noting the improved patient and surrogate satisfaction with communication and decreased clinician distress. However, there is a notable lack of empirical data about what outcome improvements patients experience, as there are considerable discrepancies in what constitutes as advanced care planning and heterogeneity in the outcomes measured. Advanced care planning remains an underutilized tool for patients. Researchers have published data to support the use of new relationship-based and supported decision making models that can increase the use and maximize the benefit of advanced care planning.
The Shared Decision-Making Theory (SDM) is crucial to end-of-life care conversations between patients, families, and providers. The Shared Decision-Making Theory allows patients and providers to collaborate on their treatment plans and efforts to ensure the patient's voice is heard. This model fosters a collaborative conversation between healthcare providers and patients that focuses on the patient's goals and beliefs, with the provider's expertise and medical knowledge to formulate a co-developed care plan. For instance, a terminally ill patient may prioritize quality of life and seek to formulate an effective plan with their trusted provider.
Patients and families may also struggle to grasp the inevitability of death, and the differing risks and effects of medical and non-medical interventions available for end-of-life care. People might avoid discussing their end-of-life care, and often the timing and quality of these discussions can be poor. For example, the conversations regarding end-of-life care between chronic obstructive pulmonary disease (COPD) patients and clinicians often occur when a person with COPD has advanced stage disease and occur at a low frequency. To prevent interventions that are not in accordance with the patient's wishes, end-of-life care conversations and advanced care directives can allow for the care they desire, as well as help prevent confusion and strain for family members. Applying the SDM Theory aids in making sure patients and providers are on the same page about the patient's plans and goals to promote mutual respect and communication. It ensures that all parties involved have their needs and wishes met and respected.
In the case of critically ill babies, parents are able to participate more in decision making if they are presented with options to be discussed rather than recommendations by the doctor. Utilizing this style of communication also leads to less conflict with doctors and might help the parents cope better with the eventual outcomes.
Another means of medication delivery, available for use when the oral route is compromised, is a specialized Macy Catheter designed to provide comfortable and discreet administration of ongoing medications via the rectal route. The catheter was developed to make rectal access more practical and provide a way to deliver and retain liquid formulations in the distal rectum so that health practitioners can leverage the established benefits of rectal administration. Its small flexible silicone shaft allows the device to be placed safely and remain comfortably in the rectum for repeated administration of medications or liquids. The catheter has a small lumen, allowing for small flush volumes to get medication to the rectum. Small volumes of medications (under 15mL) improve comfort by not stimulating the defecation response of the rectum and can increase the overall absorption of a given dose by decreasing pooling of medication and migration of medication into more proximal areas of the rectum where absorption can be less effective.
In the United Kingdom, end-of-life care pathways are based on the Liverpool Care Pathway. Originally developed to provide evidence based care to dying cancer patients, this pathway has been adapted and used for a variety of chronic conditions at clinics in the UK and internationally. Despite its increasing popularity, the 2016 Cochrane Review, which only analyzed one trial, showed limited evidence in the form of high-quality randomized clinical trials to measure the effectiveness of end-of-life care pathways on clinical outcomes, physical outcomes, and emotional/psychological outcomes.
The BEACON Project group developed an integrated care pathway entitled the Comfort Care Order Set, which delineates care for the last days of life in either a hospice or acute care inpatient setting. This order set was implemented and evaluated in a multisite system throughout six United States Veterans Affairs Medical Centers, and the study found increased orders for opioid medication post-pathway implementation, as well as more orders for antipsychotic medications, more patients undergoing palliative care consultations, more advance directives, and increased sublingual drug administration. The intervention did not, however, decrease the proportion of deaths that occurred in an ICU setting or the utilization of restraints around death.
Family members may be suffering emotionally due to the impending death. Their own fear of death may affect their behavior. They may feel guilty about past events in their relationship with the dying person or feel that they have been neglectful. These common emotions can result in tension, fights between family members over decisions, worsened care, and sometimes (in what medical professionals call the "Daughter from California syndrome") a long-absent family member arrives while a patient is dying to demand inappropriately aggressive care.
Family involvement in end-of-life care can be both beneficial and detrimental to patients, depending on the shape that involvement takes. On the one hand, family involvement is associated with reduced patient distress when the goals of the patient and the family are convergent. Loved ones can engage the patient in discussions about their care preferences, aid communication with the medical team, and offer social, emotional, and financial support. However, family involvement can also be detrimental when the goals of the patient and family are divergent. Emotionally charged decision-making and differing opinions on medical decisions like terminal sedation, withdrawing of treatment, and transitioning to hospice can lead to arguments, conflict, and poor communication. End-of-life decisions can be explained by the Theory of Reasoned Action (TRA), which balances personal values and the opinions and beliefs of family members. In the context of end-of-life cancer care, some key themes regarding familial conflict at the end-of-life include patients and family members being on different pages regarding the illness prognosis, familial strife, cultural differences, and the general stress that accompanies caregiving. In addition to these, family can be a major predictor of whether or not the person engages in the behavior, and all parties have a mutual understanding of the end-of-life care plan.
Research on patient and family preferences have elucidated some key findings. In intensive care units, good communication, coordination between different arms of the care team, and spiritual support were found to be important to both patients and their families. When patients receive subpar end-of-life care – like recurring emergency room visits, chemotherapy administered at the end-of-life, or failure to be admitted to hospice – the well-being of their loved ones can suffer. In cases where the patient did not receive appropriate end-of-life care, families and loved ones experienced more depression and regret than families and loved ones with patients who experienced appropriate end-of-life care.
In research done into shared decision-making (SDM) in regards to cancer patients receiving palliative care, it has been found that most patients rely on the physician to initiate some form of SDM, leading to family and friends being involved in the decision making process along with the patient and physician. However, this can also result in lapses of judgment, as physicians in these studies have typically showed intent to preserve a patient's "hope". This brings up a whole different case on whether or not it is physician's jobs to promote "hope", but obviously it seems like most do try to. Patients rely on their physician as an expert opinion, but in palliative care circumstances, the physician may want to involve the patient and their family more, since any medical interventions may be ineffective at that point. However, this again proves to be a slippery slope, as some patients facing existential uncertainty do not want a large part in the decision making process, instead defaulting to the previously mentioned expert opinion of doctors. The study suggests that SDM in regards to palliative cancer care is a challenging and constantly evolving situation, with it mostly revolving around the relationship between the patient, the patient's family, and the physicians in charge. Facilitating and building up the relationship between these parties is the best way to encourage positive SDM in palliative care cancer patients.
Spiritual, cultural, and religious beliefs may influence or guide patient preferences regarding end-of-life care. Healthcare providers caring for patients at the end of life can engage family members and encourage conversations about spiritual practices to better address the different needs of diverse patient populations. Studies have shown that people who identify as religious also report higher levels of well-being. This leads to a higher level of self-efficacy and provides the person with the skills to make and execute decisions relating to end-of-life care. Evidence supports that people who practice religion tend to have a more positive outlook on life and can help patients deal with stress associated with growing older. On the other hand religion has also been shown to be inversely correlated with depression and suicide. While religion provides some benefits to patients, there is some evidence of increased anxiety and other negative outcomes in some studies. Religiosity, for example, has been associated with poorer advanced care planning. Additionally, while spirituality has been associated with less aggressive end-of-life care, religion has been associated with an increased desire for aggressive care in some patients. Despite these varied outcomes, spiritual and religious care remains an important aspect of care for patients. Studies have shown that barriers to providing adequate spiritual and religious care include a lack of cultural understanding, limited time, and a lack of formal training or experience.
There is nuance to the relationship between religiosity or spirituality and end-of-life care, because different trends emerge based on factors like religious denomination and geographical location. For example, Catholics are significantly less likely to have a do not resuscitate (DNR) order compared to non-Catholics. Compared to Christians, Buddhists and Taoists in Singapore are more likely to receive aggressive, life-prolonging care. At the same time, people belonging to a particular religious or ethnic group should not be treated as a monolith. Within these groups, beliefs and end-of-life care preferences can vary quite widely, highlighting the need for open-minded, adaptable, and culturally competent end-of-life care. In the Western world, many health care providers lack knowledge about culturally and spiritually informed end-of-life care and report discomfort when engaging in religious discussions with people whose beliefs differ from their own. This is one hypothesis as to why minorities access end-of-life care at lower rates than white people. At the same time, engagement with end-of-life care services can improve when clinicians are educated on culturally and spiritually diverse beliefs, which can foster better relationships and communication between health care providers, patients, and families. Currently, web-based educational programs that center stories, dialogue, and personal reflection are showing promise at improving cultural and spiritual competence amongst providers.
Many hospitals, nursing homes, and hospice centers have who provide spiritual support and grief counseling to patients and families of all religious and cultural backgrounds.
Physicians generally have favorable attitudes towards Advance Directives, which are a key facet of end-of-life care. Medical doctors who have more experience and training in end-of-life care are more likely to cite comfort in having end-of-life-care discussions with patients. Those physicians who have more exposure to end-of-life care also have a higher likelihood of involving nurses in their decision-making process.
A systematic review assessing end-of-life conversations between heart failure patients and healthcare professionals evaluated physician attitudes and preferences towards end-of-life care conversations. The study found that physicians found difficulty initiating end-of-life conversations with their heart failure patients, due to physician apprehension over inducing anxiety in patients, the uncertainty in a patient's prognosis, and physicians awaiting patient cues to initiate end-of-life care conversations.
Although physicians make official decisions about end-of-life care, nurses spend more time with patients and often know more about patient desires and concerns. In a Dutch national survey study of attitudes of nursing staff about involvement in medical end-of-life decisions, 64% of respondents thought patients preferred talking with nurses than physicians and 75% desired to be involved in end-of-life decision making.
Confusion surrounding the difference between euthanasia and withdrawing or withholding treatment is a distinction that can be distressing for family members and doctors alike. For family members, the concern is often ethical and philosophical in nature: "If I stop life-prolonging care, am I killing my loved one?" For doctors, this concern can go one step further: "If I stop providing life-prolonging care, is that euthanasia?" In addition to the ethical implications, doctors can fear legal ramifications since physician assisted suicide must be a voluntary decision on the part of the patient and is only legal in specific places under specific circumstances. Not only can this conflict be unpleasant for doctors, it can also lead to poorer outcomes for patients. Thus, clear directives are needed to identify when it is acceptable to withdraw or withhold treatment at the end of life. One argument contends that there is no ethical distinction between stopping a life-prolonging medical intervention once it has begun, and refusing to start it all together. If the intervention is medically futile, contrary to the best interest of the patient, or unwanted by the patient (either in the moment or in an advance directive), then it is ethically acceptable to withdraw or withhold treatment.
In 2006 just over half a million people died in England, about 99% of them adults over the age of 18, and almost two-thirds adults over the age of 75. About three-quarters of deaths could be considered "predictable" and followed a period of chronic illness – for example heart disease, cancer, stroke, or dementia. In all, 58% of deaths occurred in an NHS hospital, 18% at home, 17% in residential care homes (most commonly people over the age of 85), and about 4% in hospices. However, a majority of people would prefer to die at home or in a hospice, and according to one survey less than 5% would rather die in hospital. A key aim of the strategy therefore is to reduce the needs for dying patients to have to go to hospital and/or to have to stay there; and to improve provision for support and palliative care in the community to make this possible. One study estimated that 40% of the patients who had died in hospital had not had medical needs that required them to be there.
In 2015 and 2010, the UK ranked highest globally in a study of end-of-life care. The 2015 study said "Its ranking is due to comprehensive national policies, the extensive integration of palliative care into the National Health Service, a strong hospice movement, and deep community engagement on the issue." The studies were carried out by the Economist Intelligence Unit and commissioned by the Lien Foundation, a Singaporean philanthropic organisation.;
The 2015 National Institute for Health and Care Excellence guidelines introduced religion and spirituality among the factors which physicians shall take into account for assessing palliative care needs. In 2016, the UK Minister of Health signed a document which declared people "should have access to personalised care which focuses on the preferences, beliefs and spiritual needs of the individual." As of 2017, more than 47% of the 500,000 deaths in the UK occurred in hospitals.
In 2021 the National Palliative and End of Life Care Partnership published their six ambitions for 2021–26. These include fair Health equity for everyone regardless of who they are, where they live or their circumstances, and the need to maximise comfort and wellbeing. Informed and timely conversations are also highlighted.
Research funded by the UK's National Institute for Health and Care Research (NIHR) has addressed these areas of need. Examples highlight inequalities faced by several groups and offers recommendations. These include the need for close partnership between services caring for people with severe mental illness, improved understanding of barriers faced by Romanichal communities, the provision of flexible palliative care services for children from ethnic minorities or deprived areas.;
Other research suggests that giving nurses and pharmacists easier access to electronic patient records about prescribing could help people manage their symptoms at home. A named professional to support and guide patients and carers through the healthcare system could also improve the experience of care at home at the end of life. A synthesised review looking at palliative care in the UK created a resource showing which services were available and grouped them according to their intended purpose and benefit to the patient. They also stated that currently in the UK palliative services are only available to patients with a timeline to death, usually 12 months or less. They found these timelines to often be inaccurate and created barriers to patients accessing appropriate services. They call for a more holistic approach to end of life care which is not restricted by arbitrary timelines.
Spending on those in the last twelve months accounts for 8.5% of total aggregate medical spending in the United States.
When considering only those aged 65 and older, estimates show that about 27% of Medicare's annual $327 billion budget ($88 billion) in 2006 goes to care for patients in their final year of life. For the over-65s, between 1992 and 1996, spending on those in their last year of life represented 22% of all medical spending, 18% of all non-Medicare spending, and 25 percent of all Medicaid spending for the poor. These percentages appears to be falling over time, as in 2008, 16.8% of all medical spending on the over 65s went on those in their last year of life.
Predicting death is difficult, which has affected estimates of spending in the last year of life; when controlling for spending on patients who were predicted as likely to die, Medicare spending was estimated at 5% of the total.
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