End of Life

End of Life

–A Primer on Death and Dying–

Federal legislation (Patient Self-Determination Act, requires providers participating in the Medicare and Medicaid programs to furnish patients with information on advance directives. The information is to be given to patients upon admission to a facility or when provision of care begins. Providers covered by this requirement include the following entities: hospitals, nursing facilities, providers of home health or personal care services, hospice programs and health maintenance organizations.

Advance Directives
Advance directives are legal forms that allow an individual to document his medical care preferences should he lose his medical decision-making capacity. Illinois law allows for the following three types of advance directives: (1) health care power of attorney; (2) living will; and (3) mental health treatment preference declaration. If you make one or more advance directives and/or a DNR order, tell your doctor and other health care providers and provide them with a copy.

Power of Attorney
A durable power of attorney for healthcare is a more comprehensive document that allows individuals to appoint a person to make healthcare decisions for them should they lose decision-making capacity. Anything written on this document can be rescinded at any time. The health care power of attorney lets you choose someone to make health care decisions for you in the future, if you are no longer able to make these decisions for yourself.

Living Will
A living will is a document that allows an individual to indicate the interventions he or she would want performed if terminally ill, in a coma with no reasonable hope of regaining consciousness, or in a persistent vegetative state with no reasonable hope of regaining significant cognitive function.

A living will tells your doctor whether you want death-delaying procedures used if you have a terminal condition and are unable to state your wishes. A living will, unlike a health care power of attorney, only applies if you have a terminal condition.

Do Not Resuscitate
A DNR, Do Not Resuscitate, order can be given by the client or the family. This order can be rescinded at any time. You may also ask your doctor about a do-not-resuscitate order (DNR order). A DNR order is a medical order stating that cardiopulmonary resuscitation (CPR) will not be started if your heart or breathing stops. You may sign a document directing that should your heart or breathing stop, efforts to resuscitate you will not be started. Your attending physician may also sign a DNR order.

Before a DNR order may be entered into your medical record, either you or another person (your legal guardian, health care power of attorney or surrogate decision maker) must consent to the DNR order. This consent must be witnessed by two people who are 18 years or older. If a DNR order is entered into your medical record, appropriate medical treatment other than CPR will be given to you.

Bereavement and Children
Healthcare providers should reassure their dying young patients that their feelings are accepted. They should offer love, physical closeness, and physical comfort. Providers should be sensitive to nuances in the child-s behavior regarding when and how much to communicate about their prognosis. Providers need to talk with children about death in an honest, specific way and give children an opportunity to make decisions about care whenever possible. These strategies are particularly important when the patient is an adolescent.

Ethnicity and Cultural differences and Considerations

  • Ethnicity: Need to identify the ethnicity or ethnicities the family identifies with.
  • Communication: Is an interpreter needed for communication?
  • Literacy level: Literacy levels may vary within the family. Different family members may be literate in different languages.
  • Acceptability of expression of emotions: While wailing/keening may be acceptable and expected at the time of death and at the funeral, stoic acceptance may be required by the culture subsequently.
  • Body language: Cultural expectations for posture, eye contact to denote respect as well as emotional affect.
  • Orally based vs. literacy based cultures: In orally based cultures, story telling and group learning are especially valued, i.e. Story Circles.
  • Power of Words: It may be unacceptable to directly approach feelings and issues. Again story telling is helpful. “In my experience...”
  • Cultural conflict can be a source of complicated grief. It is important to determine what the family and cultural community believes was the cause of the child-s illness. Did the family feel they had input or control in the treatment process? Is there belief that “Western” treatments were in conflict with traditional healing practices?
  • What do families and cultural groups believe about death and afterlife? This can be a source of trauma or comfort. Spiritual belief in reincarnation may involve belief that trauma to the body (such as surgical interventions) in this life could cause birth defects in a future life. This may have been a course of conflict between the family and the medical community during the course of the child-s illness and provide distress during the grief process. Was the family able to fulfill requirements for spiritual rest of the deceased? Did they have time and finances necessary for prayers, rituals and funeral requirements?
  • We as caregivers need to understand our own cultural orientation and how that affects our approach to others as well as understanding how a family-s cultural background impacts their understanding of life, health, illness, and death. As we walk with families through this most difficult time, use of a transcultural framework for the bereavement risk-assessment and care-plan will give the caregiver tools to guide the journey.
  • Spirituality - Religious/spiritual belief system.
    Keeping an awareness of cultural implications helps us provide support to all clients. An approach of reserved yet warm demeanor shows respect, and allows the provider to watch for cues. Reflecting back the degree of closeness, touch, vocal inflection and eye contact honors the bereaved individual-s sense of self. In my experience, sharing love for the child and sharing in the loss crosses many cultural barriers.
  • Communication
    Honest, compassionate communication between the patient/family unit and caregivers is essential at the end of life. Frank, open communication about resuscitation orders, artificial nutrition, hydration (giving fluids), and life support, as well as arranging personal affairs, help the patient prepare psychologically for dying. The patient should participate actively in treatment decisions as long as possible to maintain control over how and where he/she dies.
  • Reflection about the meaning of the patient-s life helps to establish a legacy of his/her contribution to family, friends, and society. Regrets about the past, guilt for risky behaviors, and sadness about the future are also normal feelings for the dying patient. Working to resolve these issues gives the patient a sense of completion and fulfillment necessary to deal with the impending sense of loss and separation.
  • For some patients, religious beliefs or a close relationship with God can be a source of support. If the dying person finds meaning and comfort in his/her faith, members of the clergy are available to address the patient-s spiritual needs.
  • Depression is a common symptom in the dying patient, arising from physical deterioration, loss of function, and a sense of impending loss and separation. Depression can be alleviated by counseling and medication.
  • Psychological, social, and legal support is available to deal with difficult questions that may arise near the end of life. A patient may need help expressing his/her wishes about death and addressing final tasks, such as making a will and getting documents in order.

End of life signs and symptoms, clinically

  • Restlessness can be treated by managing other symptoms, such as pain. Familiar faces and objects also can have a calming effect. Medication may be used when necessary.
  • Problems with incontinence (lack of normal control) of urine or stool can be managed using drugs, catheters, or disposable products.
  • Dry mouth is a common complication relieved by simple means, such as drinking fluids, breathing humidified air, sucking on ice or Vitamin C tablets, or chewing sugarless gum. Medication is also available.
  • Fatigue (tiredness) is a common symptom as death approaches. A patient may need to sleep and rest a large part of the day and rely on a caregiver for day-to-day needs.
  • At the end of life, weight loss is common. There may be some concern about loss of appetite or difficulty swallowing as the patient-s death approaches, but these conditions are not necessarily a cause of suffering for the patient. Despite concerns about weight loss and dehydration, a dying patient is usually most comfortable when allowed to eat and drink as much -- or as little -- as he or she would like. This helps the patient avoid digestive discomfort and fluid retention.
  • The dying patient has to cope with a declining physical condition, as well as relevant issues about existence, spirituality, and separation. The patient may need help to make up for loss of function and maintain quality of life for the time he/she has remaining.
  • The goals of care for the dying patient now change from curative to palliative, helping patients live comfortably, as well as supporting them and their families emotionally and spiritually.

Pain, symptom management and care at the time of death

  • Comfort is the primary goal of therapy for dying patients.
  • Drugs can also be helpful to relieve shortness of breath. Morphine is the most commonly used for this problem.
  • Oxygen therapy may also help breathing problems. Often other simple measures can make breathing more comfortable: a familiar voice to reduce anxiety, a change in position, relaxation techniques, or an open window or fan. If the patient is unable to cough and secretions collect in the airway, the doctor may recommend suctioning (using a tube to remove fluids) through the nose or mouth.
  • Medication for pain can be given around-the- clock so that it does not wear off between doses. The medication schedule is tailored to each patient-s perception of pain to ensure relief.


Grief is a global experience. Death is a great loss in any culture. Families experience this loss within the context of personal beliefs, values, and experiences. We, as health caregivers, assume a position to assist the family in helping them to prepare to make future health care decisions now.

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