Medical
Advanced care planning
Advances in medicine in the last few decades have provided an increasing number of options to extend a person's life and highlighted the importance of ensuring that an individual's preferences and values for end-of-life care are honored. Advanced care planning is the process by which a person of any age is able to provide their preferences and ensure that their future medical treatment aligns with their personal values and life goals. 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.End-of-life care conversations
End-of-life care conversations are part of the treatment planning process for terminally ill patients requiring palliative care involving a discussion of a patient's prognosis, specification of goals of care, and individualized treatment planning. A recent Cochrane review (2022) set forth to review the effectiveness of interpersonal communication interventions during end-of-life care. Research suggest that many patients prioritize proper symptom management, avoidance of suffering, and care that aligns with ethical and cultural standards. Specific conversations can include discussions about cardiopulmonary resuscitation (ideally occurring before the active dying phase as to not force the conversation during a medical crisis/emergency), place of death, organ donation, and cultural/religious traditions. As there are many factors involved in the end-of-life care decision-making process, the attitudes and perspectives of patients and families may vary. For example, family members may differ over whether life extension or life quality is the main goal of treatment. As it can be challenging for families in the grieving process to make timely decisions that respect the patient's wishes and values, having an established advanced care directive in place can prevent over-treatment, under-treatment, or further complications in treatment management. 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.Signs of dying
The National Cancer Institute in theSymptoms management
The following are some of the most common potential problems that can arise in the last days and hours of a patient's life: ;Medication administration
A subcutaneous injection is one preferred route of delivery of medications when it has become difficult for patients to swallow or to take pills orally, and if repeated medication is needed, a syringe driver (or infusion pump in the US) is often likely to be used, to deliver a steady low dose of medication. In some settings, such as the home or hospice, sublingual routes of administration may be used for most prescriptions and medications. Another means of medication delivery, available for use when the oral route is compromised, is a specializedIntegrated pathways
Integrated care pathways are an organizational tool used by healthcare professionals to clearly define the roles of each team-member and coordinate how and when care will be provided. These pathways are utilized to ensure best practices are being utilized for end-of-life care, such as evidence-based and accepted health care protocols, and to list the required features of care for a specific diagnosis or clinical problem. Many institutions have a predetermined pathway for end of life care, and clinicians should be aware of and make use of these plans when possible. Integrated care pathways should also focus on standardizing healthcare processes while tailoring individual patient needs. For example, integrated pathways can be complex and promote a major change within the patient's lifestyle. in this case, it is essential to create a pathway that will allow for an individual to maintain autonomy and their current lifestyle without having to make drastic changes. These factors can be evaluated from the Social Ecological Model. This model can be broken down into individual, interpersonal, organizational, community, and societal/ political factors. All of which can impact how an integrated pathway will be implemented. 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.Home-based end-of-life care
While not possible for every person needing care, surveys of the general public suggest most people would prefer to die at home. In the period from 2003 to 2017, the number of deaths at home in the United States increased from 23.8% to 30.7%, while the number of deaths in the hospital decreased from 39.7% to 29.8%. Home-based end-of-life care may be delivered in a number of ways, including by an extension of a primary care practice, by a palliative care practice, and by home care agencies such as Hospice. High-certainty evidence indicates that implementation of home-based end-of-life care programs increases the number of adults who will die at home and slightly improves their satisfaction at a one-month follow-up. There is low-certainty evidence that there may be very little or no difference in satisfaction of the person needing care for longer term (6 months). The number of people who are admitted to hospital during an end-of-life care program is not known. In addition, the impact of home-based end-of-life care on caregivers, healthcare staff, and health service costs is not clear, however, there is weak evidence to suggest that this intervention may reduce health care costs by a small amount.Disparities in end-of-life care
Not all groups in society have good access to end-of-life care. ANon-medical
Family and friends
Family members are often uncertain as to what they should be doing when a person is dying. Many gentle, familiar daily tasks, such as combing hair, putting lotion on delicate skin, and holding hands, are comforting and provide a meaningful method of communicating love to a dying person. 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.Spirituality and religion
Spirituality is thought to be of increased importance to an individual's wellbeing during a terminal illness or toward the end-of-life. For example, most cancer patients report some level of spirituality or religiosity, but nearly half report some degree of spiritual struggle at the end-of-life. Pastoral/spiritual care has a particular significance in end of life care, and is considered an essential part of palliative care by the WHO. In palliative care, responsibility for spiritual care is shared by the whole team, with leadership given by specialist practitioners such as pastoral care workers. The palliative care approach to spiritual care may, however, be transferred to other contexts and to individual practice. 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 chaplains who provide spiritual support and grief counseling to patients and families of all religious and cultural backgrounds.Ageism
The World Health Organization defines ageism as "the stereotypes (how we think), prejudice (how we feel) and discrimination (how we act) towards others or ourselves based on age." A systematic review in 2017 showed that negative attitudes amongst nurses towards older individuals were related to the characteristics of the older adults and their demands. This review also highlighted how nurses who had difficulty giving care to their older patients perceived them as "weak, disabled, inflexible, and lacking cognitive or mental ability". Another systematic review considering structural and individual-level effects of ageism found that ageism led to significantly worse health outcomes in 95.5% of the studies and 74.0% of the 1,159 ageism-health associations examined. Studies have also shown that one's own perception of aging and internalized ageism negatively impacts their health. In the same systematic review, they included this factor as part of their research. It was concluded that 93.4% of their total 142 associations about self-perceptions of aging show significant associations between ageism and worse health.Attitudes of healthcare professionals
End-of-life care is an interdisciplinary endeavor involving physicians, nurses, physical therapists, occupational therapists, pharmacists and social workers. Depending on the facility and level of care needed, the composition of the interprofessional team can vary. Health professional attitudes about end-of-life care depend in part on the provider's role in the care team. 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 betweenEthics
The ethics of end-of-life care revolve around dignity and respect for the patient by minimizing their suffering, enhancing their quality of life, and honoring any wishes or advance directives they may have put forth. In practice, however, these goals can be complicated by factors like patient competence, family influence, and the absence of advanced care planning. Decisions about CPR, intubation, tube feeding, terminal sedation, physician-assisted suicide, and the stopping of life-prolonging treatment can all present ethical dilemmas for doctors and caregivers as they try to strike a balance between prolonging a patient’s life and preventing unnecessary pain. Four universal ethical principles can guide healthcare providers as they navigate difficult end-of-life care decisions: * Autonomy: Respecting a person’s right to make their own decisions. Patients are typically the best decision makers in their own lives. In the context of end-of-life care, however, autonomy is closely intertwined with advance directives like designated healthcare proxies, living wills, and do not resuscitate orders. If a patient loses the ability to make sound decisions at the end of their life, then all healthcare decisions should be made in accordance with their advance directives. In the absence of an advance directive, the decision-making power is transferred to the family. If the family is unable or unwilling to make these decisions, the responsibility falls on the patient’s healthcare team. * Beneficence: The ethical obligation to make decisions that are in the best interest of the patient. If no advance directive exists, both physicians and loved ones can be faced with the difficult task of determining what the patient would have wanted their end-of-life care to look like. If an individual is unable to make their own decisions at the end of their life, consultations between doctors and family members or healthcare proxies can help determine the best course of action. Emotions can run high when a loved one is dying, which can hinder the decision-making process for both doctors and family members. * Nonmaleficence: Doing no harm. When it comes to end-of-life care, nonmaleficence generally means that the harm or pain caused by a medical intervention should not outweigh its benefit. The principle of double effect states that an action with both good effects and negative side effects can be performed ethically, as long as the negative side effect is not the goal and is not out of proportion to the intended positive outcome. For example, interventions like CPR and mechanical ventilation can be life-prolonging and even life-saving under the right circumstances – but they can also be painful and futile at the end of life. It is up to the physician, in consultation with the family, to weigh the risks and benefits of treatment and avoid putting the patient through needless suffering. * Justice: The distribution of medical resources should be fair, equitable, and impartial. In the context of end-of-life care, this often requires providers to be knowledgeable about biases toward traditionally underserved groups and advocate appropriately on their behalf. Medical resources are limited and end-of-life interventions, in particular, can require a substantial investment of time and money. It is the responsibility of doctors and clinicians to ensure that finite resources are not being used to the benefit of one group over another. For example, a 2012 meta-analysis found differences in care – especially around the decision to withdraw treatment – based on factors like age and gender. Patients from vulnerable populations like women and the elderly were more likely to be the recipients of non-treatment decisions. 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.By country
Canada
In 2012,United Kingdom
End of life care has been identified by the UK Department of Health as an area where quality of care has previously been "very variable," and which has not had a high profile in the NHS and social care. To address this, a national end of life care programme was established in 2004 to identify and propagate best practice, and a national strategy document published in 2008. TheUnited States
As of 2019, physician-assisted dying is legal in eight states (Belgium
Belgium's first palliative home care team was established in 1987, and the first palliative care unit and hospital care support teams were established in 1991. A strong legal and structural framework for palliative care was established in the 1990s, which divided the country into areas of 30, where palliative care networks were responsible for coordinating palliative services. Home care was provided by palliative support teams, and each hospital and care home recognized to have a palliative support team. In 1999, Belgium ranked second (after the United Kingdom) in the number of palliative care beds per capita. In 2001, there was an active palliative care support team in 72% of hospitals and a specialized nurse or active support team in 50%See also
* Advance health care directive * Death midwife * Liverpool Care Pathway * My body, my choice * Children's palliative care * Physician assisted suicide * Right to die * Robert MartensenReferences
Further reading
* * * * * *External links
* * * * * * The program explores the medical, ethical, and social issues surrounding end-of-life care in America today. {{DEFAULTSORT:End-Of-Life Care Bioethics Medical aspects of death Caregiving