DEATH OF THE PATIENT

The Final Hours

Care during the last hours of life, called active dying, can have profound effects on the patient, the family, and healthcare practitioners who attend the dying. Any distressing symptoms that the dying patient has been facing may become exacerbated when death is imminent. Therefore, in acute care, multidisciplinary healthcare professionals must transition from curative to comfort care. Comfort care provides symptom management for a patient who is actively dying.

Consideration is given to every aspect of care to determine whether the benefits are enough to outweigh the risks of discomfort. A plan of care is usually established by the patient or family and healthcare personnel to determine withdrawing or prevention of life-sustaining measures such as oxygen, cessation of diagnostic tests like painful blood tests, consideration of nutrition and hydration, and selection of comfort measures (Harding et al., 2020). For example:

• Vital signs may be taken every 24 hours or not at all during comfort care. If an abnormal blood pressure is not to be treated, the risk of causing arm pain outweighs taking the measurement. Conversely, a fever can cause severe discomfort. Hot skin may be sufficient to justify giving the dying patient acetaminophen, by rectum if needed.
• Artificial tears or drops of normal saline given every 1–2 hours will prevent pain from dry corneas when the eyelids remain open.
• Frequent oral hygiene with swabs prevents the discomfort of a dry mouth.

These comfort measures can be performed by a nursing assistant, except the artificial tears, which may be considered a medication requiring administration by a nurse.

SIGNS ANDS SYMPTOMS WHEN DEATH IS NEAR

Certain signs and symptoms indicate when death is near. Not every patient experiences each of these signs and symptoms, and the presence of one or more of these symptoms does not necessarily indicate that the patient is close to death. The final stage of dying may take from 24 hours to as long as 10 to 14 days.

When it is apparent that death is imminent, health professionals alert the family and confirm the goals of care. This discussion is documented in the patient’s chart, including the observation that the patient is dying.

Pain

Pain is typically the most feared symptom of dying. It can be aggravated by physical or emotional stressors. Care may include:

• Regularly assessing for severity, quality, location, and contributing and relieving factors
• Minimizing irritants such as moisture, pressure, and temperature extremes
• Administering pain medications around the clock (to prevent pain rather than treat it)
• Providing alternative comfort measures (e.g., massage, distraction, heat, repositioning)
• Including family and other visitors in comfort measures

Delirium

Delirium is a state of mind that includes confusion, restlessness, incoherence, anxiety, and often hallucinations. Care may include:

• Assessing for reversible causes
• Reorienting patient to person, place, and time with every encounter
• Providing a patient room that is quiet and well-lighted
• Medicating with benzodiazepines or other sedation as needed
• When working with the patient, staying physically close and speaking in a calm, reassuring voice

Anxiety/Restlessness

Anxiety and restlessness may increase as death becomes imminent, as evidenced by tachycardia, dyspnea, and diaphoresis. Care may include:

• Assessing for possible causes (e.g., spiritual distress, urinary retention, constipation)
• Avoiding use of restraints
• Using soft music, low lights, calm voice, and soft touch
• Limiting visitors at the bedside

Dysphagia

Patients near death may experience difficulty swallowing, with a high risk of aspiration. Care may include:

• Administering medications through routes other than oral (rectal, buccal, transdermal); discontinuing any medications that are not necessary
• Suctioning orally as needed
• Providing a modified diet (e.g., ice chips, thick liquids)
• Elevating the head during hand-fed meals or liquids and for at least 30 minutes after meals
• Considering the possibility of aspiration

Weakness/Fatigue

This may be caused by increased metabolic demands. Care may include:

• Bundling nursing activities to conserve energy
• Limiting activities to those most valued by the patient
• Providing frequent rest periods

Dehydration

This may be caused by decreased thirst and hunger at the end of life. Care may include:

• Assessing mucous membranes for dryness
• Providing frequent oral hygiene via swabs
• Using ice chips and sips of fluid, if able
• Applying lubricant to lips
• Reassuring family that the loss of hunger and thirst are natural and not dangerous at the end of life

Dyspnea

Shortness of breath may be accompanied by subjective feelings of suffocation or anxiety. Care may include:

• Elevating the head of the bed
• Having a fan blowing on the patient to move the air in the room
• Teaching the patient pursed-lip breathing
• Providing oxygen and suction as needed
• Administering medications (e.g., inhalers or expectorants)

Myoclonus

Myoclonus, or mild to severe twitching, may be caused by high opioid dosing. Care may include:

• Reducing opioid dose to alleviate discomfort
• Medicating with muscle relaxants (which may cause sedation)

Pressure Injuries

Pressure injuries may be worse at the end of life due to incontinence and poor nutritional intake. Care may include:

• Turning the patient every 2 hours if the patient is unable to move themself
• Keeping skin dry and clean
• Providing wound care, as appropriate
• Providing blankets for warmth, but avoiding applying heat
• Preventing pressure on the skin due to shearing

Incontinence

Constipation may be caused by immobility and opioids. Diarrhea and urinary incontinence may be caused by relaxation of muscles. Care may include:

• Administering suppositories, stool softeners, laxatives, or enemas, if ordered and appropriate
• Using absorbent pads for urinary incontinence
• Considering the application of a condom catheter for men or an external wicking catheter for women
• Preventing skin irritation or pressure injuries that may result from the presence of stool or urine on the skin for prolonged periods

Anorexia/Nausea/Vomiting

This may be caused by the disease process, medications, or constipation. Care may include:

• Assessing for possible causes
• Medicating appropriately for symptoms
• Providing frequent mouth care, especially after vomiting
  (Harding et al., 2020)

SIGNS OF DEATH

Signs that death has occurred include:

• Lack of respiration or pulse
• Eyes open but do not move or blink; pupils dilated
• Jaw relaxed, mouth slightly open
• Bowel and bladder contents expelled
• Patient does not respond to touch or speech
• Skin color becomes pale and waxen in appearance
• Body temperature drops
• Sound of internal fluids trickling or gurgling

When death has occurred, nurses or other clinicians express their sympathy to the family. It is enough to say, “I am sorry for your loss.”

Organ Donation

Organ procurement organizations (OPO) throughout the country facilitate the donor organ recovery process, which increases efficiency and organ yield, reduces costs, and minimizes organ acquisition charges. OPOs have taken on the responsibility of harvesting donor organs and matching them with potential recipients (NFT, 2022).

In the United States, the growing disparity between organ availability for transplantation and the number of patients in need has challenged the donation and transplantation community. The number of organs available for transplantation has been a relatively fixed national resource over the last decade. By contrast, the national waiting list rises by thousands each year, with only a fraction of those waiting receiving lifesaving transplants. In 2021, an average of 20 patients died every day while on a waiting list for one or more transplanted organs (NFT, 2022).

ORGANS AND TISSUES THAT CAN BE DONATED

One organ donor can save up to eight lives and save or improve an additional 50 lives through tissue donation. There were 34,766 organ transplants performed in the United States in 2021, while 105,766 patients were awaiting transplants at that time.

Transplant surgery is expensive. It typically isn’t planned until the patient shows proof of possession of 20% of the cost of the surgery as a copay. In the following bulleted list, the 20% copay is shown in parentheses:

• Heart, $1,382,400 ($276,480)
• Lung, single, $861,700 ($172,340)
• Liver, $812,500 ($162,500)
• Kidney, $414,800 ($82,960)
• Pancreas, $347,000 ($69,400)
  (NFT, 2022)

Most organ donations come from deceased donors (although a living donor can donate as well). Tissues can also be transplanted. The following table shows which organs and tissues can be donated from deceased donors.

MOST COMMON ORGANS AND TISSUES TRANSPLANTED IN THE UNITED STATES

(CDC, 2022c)
Organs	Heart 2 lungs Liver Intestines 2 kidneys Pancreas
Tissues	Heart valves Bone Cornea Skin Ligaments Tendons Cartilage

DISCUSSING ORGAN DONATION

The public has a generally favorable attitude about organ donation for transplants; however, not every clinician broaches the subject with patients out of concern they may be perceived as being more an advocate for the organ recipient than of their patient. Ideally, questions about organ donation are discussed with the patient in the context of advance directives. This relieves the family of making the decision during the stressful time immediately after death. Unless the patient has documented the wish to become an organ donor, the family must decide.

The Anatomical Gift Act was approved by Congress in 1968 following the first heart transplant the previous year. The 2006 United States Revised Anatomical Gift Act compels hospitals and OPOs to pursue donation in cases of brain death in designated donors to stimulate the supply of available organs (Schiefer, 2019). Federal law requires that only a “designated requestor” may approach the family about organ donation (see below).

DONATION AFTER BRAIN DEATH

Brain death statutes in the United States differ by state and institution. The Uniform Determination of Death Act (UDDA) of 1981 provides states with whole-brain criterion of death (Find Law, 2018). The UDDA offers two definitions for when an individual may legally be declared dead:

1. Irreversible cessation of circulatory and respiratory functions; or
2. Irreversible cessation of all functions of the entire brain, including the brain stem

When brain death has been confirmed, the hospital notifies the local organ procurement organization. If the patient is a potential donor, an OPO representative immediately goes to the hospital and searches the state’s donor registry for legal consent. If the patient is not registered and there is no other legal consent, consent from the family will be required. When this is obtained, medical evaluation continues.

DONATION AFTER CARDIAC DEATH

Anyone who has brain function that has been deemed incompatible with life but who does not meet all criteria for brain death is a potential candidate for donation after cardiac death (DCD). DCD may be discussed as an option with families when they have accepted that their loved one cannot survive and have made the decision to remove that person from life support. There is a 90-minute time frame in which organs can be recovered after extubation to the pronouncement of death. If the patient does not progress to cardiac death within this time, organ donation cannot occur. Tissue donation may still be an option after death.

If the family agrees to DCD, the patient is removed from the ventilator in an operating room. When the heart stops beating, a physician declares death and organs are recovered (Donor Alliance, 2022).

MEDICAL EVALUATION OF POTENTIAL DONORS

Screening of a potential donor is essential to determine whether the donor has an infection that could be transmitted to recipients through transplanted organs and/or tissues. The Organ Procurement and Transplantation Network (OPTN) policies (for OPOs) and FDA regulations and guidance (for tissue and eye banks) require a medical and social history interview to be conducted with the deceased donor’s next of kin or another knowledgeable person (CDC, 2022d).

Interviews are designed to assess the donor for:

• Risk behaviors that may have exposed the donor to certain diseases
• The donor’s past medical history
• Relevant travel history (which can be important for exposure to certain pathogens)

OPTN policy requires OPOs to perform tests to determine if the donor has certain infections:

• Human immunodeficiency virus (HIV)
• Hepatitis B virus (HBV)
• Hepatitis C virus (HCV)
• Syphilis
• Cytomegalovirus (CMV)
• Epstein Barr virus (EBV)
• Toxoplasmosis
  (CDC, 2022d)

Once a potential donor has been evaluated and accepted, additional assessments are done for the donation of specific organs.

THE MATCHING PROCESS

Following medical evaluation for contraindications, the OPTN is contacted by the OPO in order to begin a search for matching recipients. The OPTN matching process includes:

• Blood type
• Body size
• Severity of patient’s medical condition
• Distance between the donor’s hospital and the patient’s hospital
• Patient’s waiting time
• Whether the patient is available
• Tissue type
  (HRSA, 2022)

ORGAN RECOVERY

During the above process, the donor is maintained on artificial support. The condition of every organ is monitored by hospital medical and nursing staff along with the OPO coordinator, who also arranges arrival and departure times of both surgical teams. When the surgical team arrives, the donor is taken to the OR, and under sterile technique, organs and tissues are recovered and all incisions closed. The tissue and organs are then transported rapidly by commercial or contracted airplanes, helicopters, and/or ambulances to the hospital where the transplant recipient is waiting and may be prepped and ready in the OR (HRSA, 2022).

Postmortem Care

Death must be certified in a formal process called pronouncement and the findings related to cause of death documented in the patient’s medical record. Pronouncement may be done by a physician, nurse practitioner, nursing supervisor, or hospice nurse, depending on state regulations and the policies of the healthcare agency/facility involved. Unless the death occurred under unusual circumstances, an autopsy (postmortem surgical examination) is not usually required.

CARE OF THE BODY

Care of the body after death is often the responsibility of nurses and nursing assistants. How the body is cared for after death is often influenced by religion and/or culture, so health professionals should be aware of any preferences or limitations and comply with them.

For example, for a Muslim patient, the body is typically washed by family or friends to prepare it for the funeral. The eyes will be closed, the arms will be positioned across the chest, and the body will face Mecca. In the Jewish religion, the eyes are closed and the body is covered, on the floor, and surrounded by lit candles. The body is never left alone. Eating and drinking are not allowed near the body. In Jewish law, being around a dead body causes uncleanliness, so often the washing of the body is carried out by a special group of volunteers (Memory Tree, 2022).

If the family was not present at the time of death, the nurse or other responsible practitioner may make the body and the environment appear as normal as possible for the family to visit. If the patient or family has chosen cremation, or if there is no open-casket service planned, this will be the final opportunity for them to see their loved one. All equipment and supplies are removed from the bedside and any soiled linens removed from the room.

Local regulations may differ on actions related to tubes that were in place at the time of death; generally, the coroner must be notified, and no internal tubes can be removed until the patient is cleared by the coroner’s office as not requiring an investigation into the cause of death. Such cases are referred to as a coroner’s clearance. Conversely, a coroner’s case refers to instances when an investigation is deemed necessary, as dictated by the county’s policies.

Placing the body in a supine position with a pillow under the head and shoulders avoids discoloration of the face. Eyelids are closed (holding them closed for a few seconds helps them to remain closed). If the person wore dentures, those are inserted to give the face a more natural appearance. Placing a rolled towel under the chin will hold the mouth closed. The arms are positioned either at the sides of the body or across the abdomen. The identifying wristband is left on unless it has become too tight due to fluid retention, in which case it is replaced with a looser one.

Any soiled areas of the body are washed, and absorbent pads are placed under the buttocks. A clean gown is placed on the body, and the hair is brushed or combed. Any jewelry is removed, except for a wedding band, which is taped to the finger. The body is carefully covered up to the shoulders with clean bed linens. All belongings of the deceased are listed and placed in a safe storage area for the family. These measures are usually conducted by a nursing assistant in acute care and always conducted by the nursing assistant in long-term care, as directed by the nurse in charge.

Soft lighting is generally preferred, and chairs and tissues may be made available for family members. Clinicians reassure family members that they may take as much time as they need to say their last good-byes. Only when the family leaves the room should final preparations for removal of the body be initiated.

REMOVING THE BODY

After the family has viewed the body, the care provider attaches additional identification tags, one to the left great toe and one to the patient’s belongings. The entire body is then placed in a white, plastic body bag and another identification tag affixed to the outside zipper. Then the body is either picked up by the responsible mortician (undertaker) or sent to the hospital morgue, if there is one, until arrangements are made with a mortician.

Some hospitals or other agencies close the doors to all other patient rooms before transporting a body through the corridors and require the use of service elevators rather than public elevators during this transfer, if available.

Autopsy

Autopsy is no longer a routine procedure in most hospitals. It is posited that one of the reasons for the gradual decline in autopsies is the ability to obtain postmortem information by noninvasive means (Sanchez, 2019). Likewise, in 1971 the Joint Commission ceased requiring a minimum number be performed for a hospital to receive accreditation, and in 1995 the National Center for Health Statistics ceased collection of autopsy statistics (White, 2021).

The average number of deaths in United States hospitals that result in autopsies is <5% and higher in teaching hospitals. The procedure contributes to medical education, aids in the characterization of newly emerging diseases, and advances the understanding of disease-related changes. In addition, autopsy can reveal errors in clinical diagnosis.

In the event that autopsy is required, health professionals determine whether the family has any religious or cultural concerns about this procedure. Families are also informed that autopsy does not disfigure the body and does not interfere with having an open-casket service.