Introduction to the Last Hours of Living: Practical Advice for Patients, Families and Carers

This article is the first of a series for people who are approaching the end of their life, for their families and for their carers. Some parts of it may also be useful for professionals who are caring for someone who is dying, or people who want to plan in advance for their own end of life care.

It covers what to expect, thinking about your wishes for your future care, and looking after your emotional and psychological wellbeing.

What is End-of-life care?

End-of-life care (or EoLC) refers to health care, not only of a person in the final hours or days of their lives, but more broadly care of all those with a terminal condition that has become advanced, progressive, and incurable.

End-of-life care requires a range of decisions, including questions of palliative care, patients' right to self-determination (of treatment, life), medical experimentation, the ethics and efficacy of extraordinary or hazardous medical interventions, and the ethics and efficacy even of continued routine medical interventions. In addition, end-of-life often touches upon rationing and the allocation of resources in hospitals and national medical systems. Such decisions are informed both by technical, medical considerations, economic factors as well as bioethics. In addition, end-of-life treatments are subject to considerations of patient autonomy. "Ultimately, it is still up to patients and their families to determine when to pursue aggressive treatment or withdraw life support."

Credit: Danielle Macinnes / unsplash

In most advanced countries, medical spending on those in the last twelve months of life makes up roughly 10% of total aggregate medical spending, and spending on those in the last three years of life can account for up to 25%. Whether or not a physician would be surprised if a person was dead within a set period of time was somewhat accurate at predicting end of life.

End-of-life care in low- and middle-income countries

Health-care providers in low- and middle-income countries are now recognizing the importance of palliative and end-of-life care as a treatment option for seriously ill patients. Palliative care is an approach to improve the quality of life of patients and their families facing problems associated with life-threatening illness, through the prevention and relief of suffering, by means of early identification, assessment and treatment of pain and other distresses.

Palliative care begins at the start of a serious illness and is given alongside treatments designed to combat the disease. End-of-life care is a type of palliative care for people in the final months of life and is considered when the person’s condition deteriorates and active treatment does not control the disease. Palliative and end-of-life care helps those with advanced, progressive, incurable and serious illness to live as well as possible until they die

Introduction to the last hours of living for Clinicians

Clinical competence, willingness to educate, and calm and empathic reassurance are critical to helping patients and families during a loved one's last hours of living. Clinical issues that commonly arise in the last hours of living include the management of feeding and hydration, changes in consciousness, delirium, pain, breathlessness, and secretions. Management principles are the same whether the patient is at home or in a healthcare institution. However, death in an institution requires accommodations that may not be customary to assure privacy, cultural observances, and communication.

In anticipation of the event, inform the family and other professionals about what to do and what to expect. Care does not end until the family has been supported with their grief reactions and those with complicated grief have been helped to get care.

Case Study for Clinicians: Mrs A.F. is dying at home

Mrs A.F. is a 79-year-old woman with metastatic breast cancer who is in her own home, cared for by her daughter with the help of the home hospice program. She developed aspiration pneumonia, and was treated with oral antibiotics. Advance care planning indicates she does not want to go to the hospital under any circumstances, and oral antibiotics were an intermediate level of care. The patient and daughter agree that if she gets better, she may have some quality of time left. But if she doesn't, A.F. says she is ready to go. Her physician makes a joint home visit with the home hospice nurse in order to assess changes in mental status and because it sounds like her daughter panicked and considered calling the emergency services (like 911 in some countries).

Take home message for clinicians

Of all people who die, only a few (< 10%) die suddenly and unexpectedly. Most people (> 90%) die after a long period of illness, with gradual deterioration until an active dying phase at the end. Care provided during those last hours and days can have profound effects, not just on the patient, but on all who participate. At the very end of life, there is no second chance to get it right.

Most clinicians have little or no formal training in managing the dying process or death. Many have neither watched someone die nor provided direct care during the last hours of life. Families usually have even less experience or knowledge about death and dying. Based on media dramatization and vivid imaginations, most people have developed an exaggerated sense of what dying and death are like. However, with appropriate management, it is possible to provide smooth passage and comfort for the patient and all those who watch. This is the crux of End of Life Care.

Preparing for last hours of life »

Reference(s)
1). World Health Organization: End-of-life care in low- and middle-income countries - WHO Bulletin. Accessed 18.08.18. Available here: http://www.who.int/bulletin/volumes/95/11/16-185199/en/
2). NHS UK: End of life care. Accessed 18.08.18. Available here: https://www.nhs.uk/conditions/end-of-life-care/
3). Field MJ, Cassel CK, eds. Approaching Death: Improving Care at the End of Life. Washington, DC: National Academy Press; 1997:28-30
4). Wikipedia, the Free Encyclopedia: End-of-life care. Accessed 18.08.18. Available here: https://en.wikipedia.org/wiki/End-of-life_care