End-of-life care
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 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%.
Medical
Advanced care planning
Advances in medical care since the mid-20th century have expanded the options available to extend 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 process, with ongoing discussions about a patient's prognosis and conditions and conversations about medical dilemmas and options. A person will typically have these conversations with their healthcare providers 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 advance directives are a living will and durable power of attorney for healthcare. A living will includes a person's decisions regarding their future care, most of which addresses resuscitation and life support. Still, it may also cover their preferences regarding hospitalization, pain management, and specific treatments available. A living will typically takes effect when a person is terminally ill with a low probability 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 increasingly utilized.Advanced care planning often includes preferences for CPR initiation, nutrition, as well as decisions about the use of machines to keep a person breathing or support their heart or kidneys. Advance care planning can be a complex and intimidating change for ailing persons. Often, when the person must make a significant change, they will undergo five stages of change: precontemplation, contemplation, preparation, action, and maintenance. Many studies have reported benefits to persons who complete advanced care planning, specifically noting improved individual and surrogate satisfaction with communication and decreased clinician distress. However, there is a notable lack of empirical data about the outcome improvements people experience, as there are considerable discrepancies in what constitutes advanced care planning and heterogeneity in the outcomes measured. Advance care planning remains an underutilized option tool. 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 advance care planning.
End-of-life care conversations
End-of-life care conversations are part of the treatment planning process for terminally ill individuals requiring palliative care, involving a discussion of an individual's prognosis, specification of care goals, and individualized treatment planning. A 2022 Cochrane review examined the effectiveness of interpersonal communication interventions in end-of-life care. There is evidence that individuals prioritize proper symptom management, avoidance of suffering, and care that aligns with ethical and cultural standards. Specific conversations can include discussions about cardiopulmonary resuscitation, 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 dying individuals and families may vary. For example, family members may differ over whether life extension or life quality is the primary 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.Shared decision-making is crucial to end-of-life care conversations between patients, families, and providers. SDM 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, conversations regarding end-of-life care between chronic obstructive pulmonary disease patients and clinicians often occur when the person with COPD has advanced-stage disease, if at all. 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 SDM 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 can participate more in decision-making if they are presented with options to be discussed rather than recommendations by the doctor. Utilizing this communication style 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 the United States advises that the presence of some of the following signs may indicate that death is approaching:- Drowsiness, increased sleep, and/or unresponsiveness.
- Confusion about time, place, and/or identity of loved ones; restlessness; visions of people and places that are not present; pulling at bed linen or clothing.
- Decreased socialization and increased withdrawal.
- Changes in breathing and accumulation of upper airway secretions.
- Decreased demand for food and fluids, and loss of appetite.
- Decreased oral intake and impaired swallowing.
- Loss of bladder or bowel control.
- Darkened urine or decreased amount of urine.
- Skin becoming cool to the touch, particularly the hands and feet; skin may become bluish in color, especially on the underside of the body.
- Rattling or gurgling sounds while breathing, which may be loud ; breathing that is irregular and shallow; decreased number of breaths per minute; breathing that alternates between rapid and slow.
- Turning of the head toward a light source.
- Increased difficulty controlling pain.
- Involuntary movements.
- Increased heart rate.
- Hypertension followed by hypotension.
- Loss of reflexes in the legs and arms.
Symptom management
; Pain
; Agitation
; Respiratory tract secretions
; Nausea and vomiting
; Dyspnea
Constipation
Other symptoms that may occur, and may be mitigated to some extent, include cough, fatigue, fever, and in some cases bleeding.
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 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 specialized 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 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.