I think the most important key to good end-of-life care is good communication with your family and health care provider. Ideally we all should be talking about our wishes for end-of-life care and dying early on in our lives, when we are well and able to discuss them. This can be hard in our death-denying culture! We should also fill out advance directives that state our wishes for care at the end-of-life and appoint a health care representative to make sure they are respected. Lastly, involve hospice in your care, a team of professionals and volunteers that can support you and your family, before and after the death.
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Katie Ortlip, Hospice Nursing, answered
Death in our culture is often perceived as a personal experience that is a negative. The reality of death is very different. Death encompasses all individuals connect to the patient and is the final chapter of one’s life. Death needs to be treated with the dignity and respect we have for life. There are multiple keys to providing quality end of life care.
Education: The patient and their loved ones need information. They need information about options available, outcomes for the options, and resources available.
Support: Support needs to be offered to all involved. This includes social, psychological, medical, financial, and spiritual support.
Compassion: Compassion is paramount. All words and actions should be given with compassion. A friendly smile or kind word can alleviate fear and provide comfort.
Respect: Respect needs to be given regarding all views and beliefs. The experience of death and personal beliefs belong to the patient and their loved ones. While the beliefs may seem unusual or unacceptable, they must be respected.
Reprieve: Breaks needs to be given to all involved. The preparations for and stress surrounding death often lead people to focus on the tasks of death and not the act of death. Breaks can be rejuvenating and offer a new respective and outlook. This can include bring a meal, offering to it for a while with the patient, running errands, or telling a joke and offering a laugh.
Aftercare: Once the patient has died, there is still much care to be given. Those left behind have to learn how to readjust, express their feelings, and cope with difficulties such as finances and changes in lifestyles.
Focusing on each of these key points allows holistic care to be provided to the patient and their loved ones. Missing anyone of these points can be detrimental to the well being of all of those involved. As a caregiver, it is critical to remain focused on following the keys and paying attention to your own feelings. We often become so focused on giving, that we ignore how we feel. It is ok for us to feel stress, to laugh, or to cry. This humanity in ourselves is what allows us to connect with our patients and families.
The most important truth in end of life care is that the death experience belongs to the patient. When one first reads this statement the truth seems simple and easy to support but if accepted this truth changes every aspect of care for patients.
The patient unit consists of the actual patient and those closest to them. The patient unit directs care at end of life. The choices made must be informed but not cohersed. The words "against medical advise" must be replaced by truth related to benefits and burdens of treatment choices. Death is not intentionally hastened or prolonged by treatment choices made with fidelity to the comfort of the patient and their loved ones. The first key to good end of life care, therefore, is communication. Honest assessment of the patient's condition and prognosis along with active listening to the patient and their loved ones.
The second key would be to educate patients and family. As early as possible in disease trajectory patients need to consider final choices and wishes. Education and placement of legal protection of patient choices is the best way to insure decisions can be made in the best interest of the patient up to the time of death. Advanced directives and placement of healthcare power of attorney must be presented while the patient is able to make informed choices if possible.
The third key is to honor the patient and their wishes. Honoring a patient means giving care with protection of privacy. Honoring the person requires empathy of the patient's condition, situation, and relationships. Thinking about how it feels to be covered during a bath, changed like an infant, and unable to meet expectations of loved ones who want the patient to connect through the process of disconnecting can help the caregiver deeply honor the patient. One of the best ways for family to honor a patient is to get together with photo albums and pizza or a potluck meal and share stories with family and friends in the last days of life. Honor also comes with the realization that patients must know it is their time to leave this world. No one can make this time come for patients.
The last key to good end of life care is after care for family and friends. Connecting with those who share one's love and memories of the deceased can ease heartache and loss. Support groups, memorial services, and honoring the things that were special about our relationships can go a long way toward healing hearts broken in loss.
America's reluctance to accept death means we usually respond to dying with overwhelming fear. In compassion, we must honestly listen to what our dying loved one actually wants. Most of us do not want to spend our last days in an intensive care unit hooked up to a bunch of machines with lights and sounds reacting to our bodies' every change. Sadly this is the death many Americans get, although we wish for something very different. The last memories we hope to create are at home, the home we spent a lifetime creating, the place that gives us comfort and strength. We want to surround ourselves with those who love us, say goodbyes, share stories, and rest in quiet calm.
To harvest that dream, we must plant the right seeds today. If you anticipate having to make end-of-life plans, or know someone who will, here are the things you can do now:
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- Talk to your doctor. Talk about what makes your life meaningful. Consider specific conditions, like permanent unconsciousness and terminal illness.
- Fill out an advance directive. Have the conversation. Would you be called on to make decisions for a parent or loved one who couldn't? Then talk to them about what they want.
- Remember, it's not as hard as you think, and help is available.