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Death is the inevitable final chapter of life. During the later half of the twentieth century, we became a “death denying society”, valuing youth and independence. Death and dying has often been deemed as taboo by many in our society.

This article addresses some of the medical and legal issues involved in death and dying. Medical technology combined with longer lifespans has resulted in a larger number of older individuals with chronic health problems, more dependent on care for longer periods of time. These elderly individuals have been cared for less by family members in the home environment and more by healthcare professionals in a formal care setting often due to their level of acute care.
Issues surrounding the end-of-life are numerous and their significance unique to each individual. Family members along with health care providers interact significantly with dying individuals and and are often called upon to provide physical care and supportive guidance.

PALLIATIVE & CURATIVE CARE DEFINED:

Two basic types of healthcare can be provided; curative and palliative, each based upon different reasoning and goals. Curative care focuses on prolonging life and aims to restore health. Palliative care focuses on the quality of life, recognizing that restoration of health is not possible. Death is viewed as the natural final stage of life and palliative care focuses on reducing discomfort, suffering and promoting life closure.

It is important to realize that both palliative and curative care provision are, again, unique to each individual. Depending upon an individual’s circumstances and wishes regarding what medical care will be accepted, each may be provided independently (usually the most common) or both at the same time (less common). One such example of simultaneous provision would be a fully-functional individual with inoperable brain cancer who has developed a mild urinary tract infection. Palliative care would be ongoing for pain and symptom management while curative care is provided for the urinary tract infection to prevent sepsis.


LEGAL AND ETHICAL ASPECTSADVANCED DIRECTIVES

It is of primary importance for family and health care providers to recognize that individuals have specific rights related to their healthcare decisions including the right to refuse care or have specific wishes followed regarding the types and extent of care that they wish to be provided.
An advanced directive is a written document detailing the wishes of an individual regarding the types and extent of health care predetermined as acceptable. The directive may take the form of:
  • a living will
  • a pre-hospital advance directive for emergency medical service (EMS)
  • a medical power of attorney (designation of a health care surrogate or proxy, an individual who can make health-care-related decisions on behalf of the individual should they become unable to do so).
It is crucial for individuals providing guidance to the dying individual and their family members to understand that these three types of documents, living will, medical power of attorney, and pre-hospital advanced directive for EMS are NOT the same thing. If an individual desiring palliative care has chosen to die in their home, it is imperative that the pre-hospital advanced directive for EMS (known as a DNRO) be filled out by the patient (or proxy) and their physician and kept with the individual at all times. Part of the form is designed to be removed and worn as a wristband. Otherwise, if someone (a frightened caregiver, a sitter, friend, etc.) calls 911 and rescue responds , without this form, medical care mandated by EMS protocols may be followed despite the individual’s wishes.
Advanced directives are legally, ethical and social important and help promote autonomy and dignity at the end-of-life. Advanced care planning helps care providers to understand the values and choices of an individual while fulfilling the legal obligation to facilitate individual’s rights to participate in their own healthcare decision making.


CARING FOR THE DYING INDIVIDUALAND THEIR FAMILY MEMBER(S)

End-of-life care is not merely caring for the physical needs of a dying individual and providing post-mortem care. Family and the health care team must prepare, educate, and support the dying individual by providing presence, attentively listening and by facilitating open and honest communication in preparation for death and during the dying process.

Some individuals wish to be very involved in the decision process and others prefer not to be. The extent to which individuals wish to be involved is also related to the stage of death and dying the individual may be in. Obviously, an individual in denial may not be very interested in planning their care, whereas an individual who has accepted their inevitable death may desire a greater level of involvement. Supporting the choices of the dying individual and their family members is very important, regardless of whether the health care team agrees with them or not. The health care professional must avoid conveying any personal biases regarding end-of-life issues.

Cultural, religious, and social belief variations surrounding death vary widely and there is no universal accepted way for death to be viewed or for dying individuals and family members experiencing loss of a loved one to behave.
One common death-related fear is dying alone. Family members are frequently with the dying individual (this is also referred to as a “death vigil”). It is important to remember that family presence at the end-of-life is a decision that should be made by the family and not by health care providers. It is also equally important not to judge the behavior of family members as inappropriate, as the grieving process is unique. Some family members, for their own personal reasons, may be unable to hold a “death vigil”.

Supportive care may also include spiritual support provided by a Priest, Pastor, or other spiritual leader. Health care providers must refrain from imposing their own spiritual beliefs on the dying individual and family members and offer to arrange for spiritual support, but not insist on calling a Priest or Pastor regardless of religious preference.


PAIN MANAGEMENT AND COMFORT MEASURES

One of the most significant death-related concerns is pain. Many individuals fear a painful death. Family members fear having to watch their loved one die suffering. Many people fear that modern medicine and longer life spans may result in a prolonged and more difficult dying process.

Thankfully, the use of pain medication has advanced significantly and the fears of “causing addiction” are no longer viewed as a valid concern among the dying individual. Many forms of pain medications are available including quick-released oral forms (such as lozenges or liquid absorbed through the oral mucosa) and transdermal forms (patches absorbed through the skin). Selection of adequate and appropriate pain medication requires communication and monitoring for effectiveness. As mentioned before, the dying process includes slowing down and stoppage of non-essential body systems first. Therefore, the individual with effective pain control wearing a patch may require switching to an absorbed mucosal, intramuscular, or intravenous form when death is very near. The consideration of requesting hospice services is paramount in these situations.

It is also important to educate family members that pain medications, particularly narcotics, should not be stopped abruptly because the dying individual has become comatose. Stopping pain medication may cause withdrawal symptoms and result in an uncomfortable death.

Health care team members, especially nurses and physicians, must educate family members about appropriate use of pain medications and especially stress providing pain relief is not a mechanism for speeding up the dying process. Often, family members fear medicating their loved one because they fear giving a last dose of pain medication that may cause death.

Other comfort measures include:
  • Proper body positioning
  • Adequate oral and nasal hygiene
  • Lubrication of the eyes if unable to blink
  • Use of anti-pyretics such as acetaminophen (Tylenol) to reduce discomfort from fever


AFTER DEATH

After death has occurred, there are several responsibilities the family and health care team has depending upon the healthcare setting and the circumstances of death.

After death, nursing duties required by law may include:
  • Asking about organ and tissue donation
  • Care of the body (leaving invasive lines and tubes intact until the need for autopsy has clearly been determined)
  • Completing required paperwork and charting
  • Cooperating with appropriate authorities and providing information regarding the circumstances and time of death
Depending on the healthcare setting, additional responsibilities may include:
  • Providing post-mortem care (again, unique individual circumstances may alter this responsibility as cultural and religious norms often have specific rules to govern who is permitted to touch the deceased)
  • Providing bereavement support for family members
  • Assisting with phone calls
  • Securing of personal items of value consistent with facility protocol
  • Removal of personal belongings from the facility; arranging for charity donation or disposal per family request (in long term care settings)
  • Disposal of remaining medications to avoid accidental poisoning in the home or return of unused medications for proper credit in institutions
  • Arranging for removal of medical equipment and/or supplies
  • Assisting with funeral arrangements
  • Providing bereavement support for family members, directing them to available resources


SUMMARY

Providing end-of-life care is a challenging, rewarding and demanding task. There are many legal, ethical and social concerns that the family and health care providers must be aware of to provide holistic care to the dying individual and their family. Care is not simply limited to caring for physical needs, but encompasses psychological, and spiritual aspects unique to each individual.

For additional information on hospice:

Hospice Foundation of America www.hospicefoundation.org

Joe A. Flores is an attorney and a nurse practitioner. He is a native of Alice, Texas and a graduate of Alice High School. Mr. Flores and his wife Priscilla reside in Corpus Christi, Texas.
 
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