August 20, 2018

Preparing for the Last Hours of Life

First published 31.01.2011; Edited and republished 20.08.2018
This is the second of a series of articles 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.

Planning ahead for the end of life

This is sometimes called advance care planning, and involves thinking and talking about your wishes for how you're cared for in the final months of your life. This can include treatments you don't want to have.

Planning ahead like this can help you let people know your wishes and feelings while you're still able to. Letting your family know about your wishes could help them if they ever have to make decisions about your care.

These links from the UK NHS take you to more information on:

1). Why plan ahead: how you and your family, friends and carers can benefit from planning ahead for your future care.

2). Advance statement: find out what an advance statement is, and how you can create one to let people know your wishes.

3). Advance decision to refuse treatment: if you don't want certain kinds of treatment in the future, you can make a legally binding advance decision.

4). Lasting power of attorney: find out how you can legally appoint someone to make decisions about your care in the future if you become unable to make decisions yourself.

5). Making a will: countries may have different routes to making a will. You may prefer your own country's government advice; however, the UK government has very good information on this. See GOV.UK information on how to make a will.

Your wellbeing

Looking after your health and wellbeing is important when you're living with a terminal (life-limiting) condition.

These pages from the UK NHS aim to answer questions you may have about pain and other symptoms, and provide ideas for coping:

1). Coping with a terminal illness: information, sources of support and tips from experts on how to cope with a terminal diagnosis.

2). Managing pain and other symptoms: find out how pain and other symptoms, such as constipation, can be managed. Includes self-help suggestions.

3). Ways to start talking about the fact you are dying: ideas on how to bring up the topic of your illness and the future.

4). Physical changes in the last hours and days: talks about changes to your body that may happen in the last stages of life.

Non-medical care and support

1). Family and loved ones

Many times, family members are uncertain what they can do 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 members may also be coping with unrelated problems, such as physical or mental illness, emotional and relationship issues, or legal difficulties. These problems can limit their ability to be involved, civil, helpful, or present.

2). Spiritual care in end of life care

Pastoral/spiritual care is of particular significance in end of life care. 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.

Practical advice for Clinicians

Preparing for the Last Hours of Life

During the last hours of life, most patients require continuous skilled care. This can be provided in any setting as long as the professional, family, and volunteer caregivers are appropriately prepared and supported throughout the process. The environment must allow family and friends access to their loved one around the clock without disturbing others and should be conducive to privacy and intimacy. Medications, equipment, and supplies need to be available in anticipation of problems, whether the patient is at home or in a healthcare institution. As the patient's condition and the family's ability to cope can change frequently, both must be reassessed regularly and the plan of care modified as needed. Changes in the patient's condition can occur suddenly and unexpectedly, so caregivers must be able to respond quickly. This is particularly important when the patient is at home, if unnecessary readmission is to be avoided.

If the last hours of a person's life are to be as positive as possible, advance preparation and education of professional, family, and volunteer caregivers are essential, whether the patient is at home, in an acute care or skilled nursing facility, a hospice or palliative care unit, prison, or other setting. Everyone who participates must be aware of the patient's health status, his or her goals for care (and the parents' goals if the patient is a child), advance directives, and proxy for decision making. They should also be knowledgeable about the potential time course, signs, and symptoms of the dying process, and their potential management.

Help families to understand that what they see may be very different from the patient's experience. If family members and caregivers feel confident, the experience can be a time of final gift giving. For example, when parents feel confident about providing for the needs of their dying child, their sense that they are practicing good parenting skills is reinforced. If they are left unprepared and unsupported, they may spend excessive energy worrying about how to handle the next event. If things do not go as hoped for, family members may live with frustration, worry, fear, or guilt that they did something wrong or caused the patient's death.

Establish in advance whether potential caregivers, including professionals who work in institutions, are skilled in caring for patients in the last hours of life. Do not assume that anyone, even a professional, knows how to perform basic tasks. Those who are inexperienced in this particular area will need specific training in areas such as body fluid precautions. Written materials can provide additional support to caregivers when experts are not present.

Although we often sense that death will either come quickly over minutes or be protracted over days to weeks, it is not possible to predict with precision when death will occur. Some patients may appear to wait for someone to visit, or for an important event such as a birthday or a special holiday, and then die soon afterward. Others experience unexplained improvements and live longer than expected. A few seem to decide to die and do so very quickly, sometimes within minutes. Although it is possible to give families or professional caregivers a general idea of how long the patient might live, always advise them about the inherent unpredictability of the moment of death.




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

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