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.
Five 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. Help guide 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:
- Breathing machines
- Blood pressure medicine
- CPR (cardiopulmonary resuscitation)3
- Blood products
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:
- Living Wills
- 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