END OF LIFE PREAMBLESat Oct 13, 2012 19:29184.108.40.206Statement on End-of-Life Care
In the last phase of life people seek peace and dignity. To help realize this, every person should be able to fairly expect the following elements of care from physicians, health care institutions, and the community.
The opportunity to discuss and plan for end-of-life care. This should include: the opportunity to discuss scenarios and treatment preferences with the physician and health care proxy, the chance for discussion with others, the chance to make a formal "living will" and proxy designation, and help with filing these documents in such a way that they are likely to be available and useful when needed.
Trustworthy assurances that physical and mental suffering will be carefully attended to and comfort measures intently secured. Physicians should be skilled in the detection and management of terminal symptoms, such as pain, fatigue, and depression, and able to obtain the assistance of specialty colleagues when needed.
Trustworthy assurance that preferences for withholding or withdrawing life-sustaining intervention will be honored. Whether the intervention be less complex (such as antibiotics or artificial nutrition and hydration) or complex and more invasive (such as dialysis or mechanical respiration), and whether the situation involves imminent or more distant dying, patients' preferences regarding withholding or withdrawing intervention should be honored in accordance with the legally and ethically established rights of patients.
Trustworthy assurance that there will be no abandonment by the physician. Patients should be able to trust that their physician will continue to care for them when dying. If a physician must transfer the patient in order to provide quality care, that physician should make every reasonable effort to continue to visit the patient with regularity, and institutional systems should try to accommodate this.
Trustworthy assurance that dignity will be a priority. Patients should be treated in a dignified and respected manner at all times.
Trustworthy assurance that burden to family and others will be minimized. Patients should be able to expect sufficient medical resources and community support, such as palliative care, hospice or home care, so that the burden of illness need not overwhelm caring relationships.
Attention to the personal goals of the dying person. Patients should be able to trust that their personal goals will have reasonable priority whether it be: to communicate with family and friends, to attend to spiritual needs, to take one last trip, to finish a major unfinished task in life, or to die at home or at another place of personal meaning.
Trustworthy assurance that care providers will assist the bereaved through early stages of mourning and adjustment. Patient and their loved ones should be able to trust that some support continues after bereavement. This may be by supportive gestures, such as a bereavement letter, and by appropriate attention to/referral for care of the increased physical and mental health needs that occur among the recently bereaved.
End of Life Issues
How Can An Emergency Department Assist Patients And Caregivers At The End Of Life?
Dying is an inevitable event. That said, the process of dying, a phase often referred to as "the end of life" can be puzzling and frightening to patients and caregivers. It can be hard to know what to expect, how to get help and to know that the help is right for you and your family.
5 ways that the Emergency Department can help
1. Assist in the recognition and understanding of the natural changes associated with the end of life and what can be expected as the body fails.
In the setting of chronic, progressive terminal illness, patients in their last weeks to months will often have1:
•Progressive weakness and exhaustion
•Needing to sleep much of the time, often spending most of the day in bed or resting\
•Weight loss and muscle wasting
•Loss of appetite and difficulty eating or swallowing fluids
•Decreased ability to talk and to concentrate
•Loss of interest in things that were previously important
•Loss of interest in the outside world and wanting only a few people nearby-the person with cancer may want only a few special people to visit, or may need visiting time to be limited
The following characteristics are common during the final days and hours of life:
•Breathing becomes slower, sometimes with very long pauses between breaths
•Congestion with gurgling or rattling sounds when breathing as the patient becomes unable to clear thick secretions from the chest
•Skin becomes cool, especially the hands and feet, and may turn a bluish color
•Dry mouth and dry or cracked lips
•Decreased amount of urine
•Incontinence (loss of bladder and bowel control)
•Disorientation and confusion about time, place, and identity of people, including family and close friends
•Hallucinations (seeing or hearing things that are not there)-these are normal and are not a cause for concern unless they scare or upset the person
•Drifting in and out of consciousness, possibly entering a coma
2. Assist in the relief of pain or other types of suffering at the end of life.
Not all patients have pain or suffer at the end of life, but some do. When this occurs and cannot be controlled by measures at home, patients may present to the emergency department. Common symptoms encountered at the end of life include:
•shortness of breath
3. Helpguide patients and families regarding the helpfulness of tests and procedures at the end of life.
Some patients and caregivers may feel that further tests and procedures may be helpful at the end of life to attempt the reversal of the natural death process and seek care starting in the emergency department. Others may accept the processes associated with the end of life, but they may encounter situations for which they are not prepared. Sorting out what may and may not be helpful is called "determining the goals of care". The emergency department staff may ask what types of things you or your loved one is hoping for at the end of life and then recommend in their medical opinion what might and might not be helpful. Common procedures and interventions discussed include:
•Artificial fluids or nutrition2
•Artificial life support including:
◦Blood pressure medicine
◦CPR (cardiopulmonary resuscitation)3
4. Assist in recommendations regarding next steps in care.
When patients show signs that the end of life is near, the emergency department staff may suggest special teams and services that are experts in this phase of life. They may suggest hospice care or a referral to a palliative care consultant. In some cases, particularly when a patient at the end of life desires to go home or die outside the hospital setting, a patient may be referred for hospice services from the emergency department. 4
5. Assist in making sure that end of life wishes and advance care plans are respected.
Many patients have discussed with their caregivers and other loved ones what their wishes are at the end of life. Some patients have taken the important step of creating legal documents that discuss their end of life wishes. These types of plans are preferred by medical personnel to communicate clearly the wishes of the patient regarding the type of care they wish to receive at the end of life. Examples of advance care planning documents include5:
•Durable Power of Attorney for Healthcare
•Physician Orders for Life Sustaining Treatment
•Do Not Resuscitate Orders
In cases where no plan exists, emergency department staff may address these issues during the emergency department visit and when possible assist patients and caregivers in the completion of these types of documents and orders.
1 From "Care in the Final Hours". National Cancer Institute. http://www.cancer.gov/cancertopics/pdq/supportivecare/lasthours/patient/allpages
2 "When Patient's Cannot Eat or Drink" http://www.rwjf.org/newsroom/feature.jsp?id=21336&typeid=151&parentid=20938
3 "CPR: Its not life ER". http://www.rwjf.org/newsroom/feature.jsp?id=21335&typeid=151&parentid=20938
4From "Hospice for End of Life Care". American Association of Retired Persons http://www.aarp.org/families/end_life/a2003-12-02-endoflife-hospice.html
5 "Decision Making Isn't Just a Family Matter". http://www.rwjf.org/newsroom/feature.jsp?id=21337&typeid=151&parentid=20938
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