Active Dying

When a doctor or healthcare professional uses the term “active dying,” they are referring to a period of about the three to five days that immediately precedes death. Active dying generally follows a pre-active phase of dying that lasts about two weeks. Keep in mind, however, that it is impossible to predict how long a single individual may take to die. Sometimes a person appears to be entering the active dying stage only to recover for a short time. This brief  period of recovery is often referred to as a “death rally,” says author and end-of-life educator Barbara Karnes. 

Jump Ahead to: 

• Physical Symptoms of Active Dying
• Behavioral and Cognitive Signs of Active Dying
• Caring for Someone Who Is Actively Dying
• Treating Terminal Agitation (H2 or H3?)
• Signs of Death

Physical Symptoms of Active Dying 

As a dying person moves closer to death, their body begins to shut down and all of their bodily functions begin to fail. According to Hospice Foundation of America, this typically manifests as:

• Extreme lethargy or a semi-comatose or comatose state. The person may not be arousable or respond to questions or verbal commands. 
• Erratic breathing. As death draws closer, a dying person may breathe in a pattern known as Cheyne-Stokes breathing, during which the breath is very rapid and shallow, then very slow, then absent for a period of time. (This is known as apnea). This pattern may continue for some time.
• Noisy respiration, sometimes referred to as a “death rattle”
• No desire for food or drink

• Loss of bladder and bowel control
• Cold extremities; the person may also say that they can’t feel their arms or legs
• Changes in skin color; extreme paleness and/or blue color (cyanosis), especially around the mouth, hands and feet. The skin may also take on a yellowish tinge.
• Mottling; a reddish-purple marbled appearance of the skin, particularly in the extremities
• Very little or no urine output
• Muscle rigidity
• Unstable heart rate and blood pressure; both the heart rate and blood pressure typically decrease
• Skin ulcers that develop suddenly, known as “Kennedy ulcers.”
• Increased pain: Dying is not inherently painful, but issues such as prolonged immobility or disease progression can cause physical pain to increase.

Behavioral and Cognitive Signs of Active Dying

According to Medscape’s The Last Hours of Living, there are “two roads to death.” The first, and most common, is a gradual decrease in consciousness. In these cases, the person becomes more and more sleepy and eventually loses consciousness. They remain unresponsive until the moment of death. 

The second “road to dying” is far less pleasant. For reasons that are not well understood, some people experience a phenomenon known as “terminal delirium or terminal agitation” during the days or hours leading up to death. When this happens the person may exhibit the following behaviors:

• Agitation and restlessness
• Irritability
• Confusion
• Jerking movements
• Hallucinations 
• Delusions 
• Crying out as if they are in pain

According to Medscape, terminal delirium is rarely a sign that a dying person who was previously comfortable is in physical pain. In fact, it is extremely rare for a person who has not been in pain in the weeks and days leading up to death to suddenly develop severe pain while actively dying. Rather, it is far more likely that the behavior is simply the brain’s response to the many physiologic changes that occur when death is near. 

Caring for Someone Who Is Actively Dying

When someone is dying, caregivers and loved ones may feel helpless, especially if the person is unresponsive and unable to tell them how they feel. However, there are still a number of measures that family and loved ones can use to help ease the transition and make the dying person’s last days as comfortable as possible. According to hospice nurse Barbara Karnes’ “The Eleventh Hour,” caregivers should:

• Change the person’s position frequently: Even if they appear unresponsive or comatose, they may still be uncomfortable if left in one position for too long
• Continue any previous pain management regimen. Contact the hospice provider or attending physician if pain isn’t adequately controlled. 
• Keep bed linens clean and dry. Adult diapers may be necessary if the person is incontinent of urine or stool
• Clean the person’s mouth with a damp “toothette” or glycerine swap. Moisten the lips with lip balm
• Provide gentle touch. Hold their hand. Stroke their forehead. Gently stroke their cheek.
• Talk to the person as if they can hear you. Studies show that hearing is the last sense to disappear when someone is close to death.
• Perform whatever bedside rituals seem appropriate to you. Pray; meditate; sing or play calming music; use essential oils (do not use candles if oxygen is in use)

Treating Terminal Agitation 

When confronted with symptoms of terminal agitation in someone who is dying, it’s best to first try comfort measures such as turning or repositioning them, giving them tiny sips of water, or using a weighted blanket to calm anxiety and provide extra warmth. If the person appears too warm, simply taking off some of their bed covers and placing a cool cloth on their forehead may help. 

Gentle massage or holding the person’s hand may also provide a measure of relief. If your loved one is religious, you can ask a member of the clergy or a spiritual advisor to perform an appropriate end-of-life ritual. This may give the dying person a sense of closure and peace. 

Unfortunately, however, in many instances of terminal delirium, every effort made to comfort the dying person seems to fail. This is extremely distressing for friends and family in attendance, who are often traumatized by what they perceive to be their loved one’s “horrible, painful death.” In these cases, the doctor may institute palliative sedation using a combination of medications that induce deep sedation or complete unconsciousness. These may include an opiate such as morphine or fentanyl to ease any physical discomfort and shortness of breath as well as a benzodiazepine such as midazolam (Versed) or lorazepam (Ativan) to alleviate anxiety, promote muscle relaxation and prevent seizures. The doctor may also order an antipsychotic medicine such as haloperidol, especially if the dying person seems to be having hallucinations.

Palliative sedation is considered a treatment of last resort to relieve unbearable suffering at the end of life. It usually results in the dying person remaining unresponsive until death occurs. 

Signs of Death

Although it would seem that the signs of death should be readily apparent, they may be difficult to detect when a person has been nearing death for some time. A person who is in a deep coma, for example, may have very shallow respirations and be unresponsive to touch or voice commands, but still be alive. Thus, it’s advisable to take the time to check for these definitive signs that death has occurred:

• There is an audible sigh as air leaves the body, and no further effort to inhale. Breathing stops completely.
• Pulse is absent (Check for a pulse on the side of the neck below the ear, as wrist pulse may not be present even if the person is alive).
• Skin becomes pale and cool to the touch.
• Eyes may be open or closed; pupils are dilated and unresponsive to light.
• Lack of blink reflex when the eye is touched.
• Jaw slackens, mouth may fall open.
• Relaxation of bowel and bladder sphincters, potentially leading to the release of urine or stool 

To learn about what to do after someone dies, see our Comprehensive Step-by-Step Planning Guide: Immediately Upon Death

Sources

“Signs of approaching death”. Hospice Foundation of America. https://hospicefoundation.org/Hospice-Care/Signs-of-Approaching-Death

“The Last Hours of Living: Practical Advice for Clinicians”. Medscape. https://www.medscape.com/viewarticle/716463?form=fpf

“Haloperidol”. WebMD. https://www.webmd.com/drugs/haloperidol-haldol

“Cheyne Stokes Breathing: What to Know”. Healthline. https://www.healthline.com/health/cheyne-stokes

An unattended death occurs when the person who died was alone and was not under direct care or medical supervision at the time of death. This can include deaths in which the causes are known or unknown, although deaths of unknown causes will generally require further investigation by a medical examiner. Due to the nature of unattended deaths, most are discovered only after a significant period of time has passed. Depending on the circumstances, the body of the person who died may be found unintentionally by friends, family, neighbors, landlords, or during a welfare check conducted by law enforcement officials. 

The circumstances surrounding unattended deaths can vary. Although unattended deaths frequently include deaths due to natural causes among those living alone, or those affected by the widespread epidemic of loneliness and isolation, other causes of death can be involved as well. For example, unattended death can include those resulting from accidents, homicides, or suicides if no one else witnessed the death. Deaths that occur in nursing homes, hospitals, or long-term care facilities are not considered to be unattended, even if the deaths weren’t witnessed, since the person who died is considered to be under the care of a physician in these settings.

When an unattended death of an unknown cause occurs, an investigation is usually conducted by law enforcement. The purpose of these investigations is to confirm the identity of the person who died, determine the cause and manner of death, and rule out any suspicions of foul play. The cause of death will be determined during an autopsy, which is conducted by a medical examiner or coroner. Not all unattended deaths require an investigation, especially if the cause of death is already evident; however, sometimes people find that having additional insight into the cause of death provides a sense of closure. 

Sources

“Okla. Admin. Code § 445:10-1-4 – Unattended death”. Cornell Law School. https://www.law.cornell.edu/regulations/oklahoma/OAC-445-10-1-4

“Sudden or unattended death investigations”. Anne Arundel County Police Department. https://public.powerdms.com/aac/documents/286 

“What is an “unattended death,” and why are they investigated?”. KRTV News. https://www.krtv.com/news/what-is-an-unattended-death-and-why-are-they-investigated 

“Attended versus Unattended Death”. American Institute of Crime Scene Integrity. https://aicsi.com/blog/attended-versus-unattended-death/ 

Being present at the death of someone you care deeply about is a profound and sometimes life-changing experience. Thus, it’s impossible to predict how any one person will react. According to Medscape’s “The Last Hours of Living,” emotional reactions of loved ones include everything from numbness to disbelief to abject despair. What’s important to remember is that any of these reactions is normal and expected and perfectly OK. 

With that being said, for many people who have witnessed the pre-active and active dying phases of someone they love, the first emotion they feel is relief. They know the person is no longer suffering and no longer hovering in the unknown space between life and death, and that is a very comforting thought. Later, relief may be followed by a period of intense sadness, often accompanied by emotions such as fear, anger, guilt and despair. Some people feel as if their loved one has abandoned them; others simply feel terribly alone. Much of this depends on your relationship with the person who died and how emotionally connected to them you are. 

Physical reactions are also not unusual following the death of someone you love. You may feel a hollowness or “pit in your stomach,” or a tightness in your chest, and your heart may race uncontrollably. You may even feel dizzy, as if you are about to faint. These are perfectly normal reactions to extreme emotional and physical stress, so try not to let them frighten you. Take slow, deep breaths to calm your nerves, and leave the area if you need to take a break. Death is not an emergency. Take some time to collect your thoughts and experience what you are feeling, gather with loved ones and process your initial grief. (Learn more in our section on grief and loss.)

Sources

“The Last Hours of Living: Practical Advice for Clinicians”. MedScape. https://www.researchgate.net/profile/Linda-Emanuel-2/publication/267839765_The_Last_Hours_of_Living_Practical_Advice_for_Clinicians_The_Last_Hours_of_Living_Practical_Advice_for_Clinicians_CMECE/links/55045eeb0cf2d60c0e66e52c/The-Last-Hours-of-Living-Practical-Advice-for-Clinicians-The-Last-Hours-of-Living-Practical-Advice-for-Clinicians-CME-CE.pdf

A death certificate is a legal document filed with the government that states the time, date, and manner of a person’s death. It is required when you make arrangements for burial or cremation, request life insurance benefits or apply for survivors’ benefits with Social Security. It is also necessary when probating a will, or settling property or estate matters of the deceased. State and federal governments also use the information in death records to track leading causes of death and to inform healthcare policy.

A death certificate may be filled out by anyone who is familiar with the person who died. However, only a healthcare professional, coroner or medical examiner can legally certify the death. The U.S. Standard Certificate of Death, which is the form used in most states, requires the following demographic data:

• Full legal name
• Date of birth
• Age
• Occupation
• Race
• Educational level achieved
• Residence address
• Military service (yes or no)
• Spouses name
• Father’s name
• Mother’s name

The form also asks for the address where the death occurred and the method of final disposition. 

These details can be filled out by the next of kin, but are usually handled by the funeral director if a funeral home is involved. In some states, even if the form is filled out by the family (as in a home funeral) a funeral director must certify that the information is accurate and complete. 

The last part of a death certificate is filled out by the healthcare professional (doctor, nurse practitioner, coroner or forensic pathologist) who certifies the death. It includes the date and time death was legally pronounced, the immediate cause of death (e.g., heart attack), the underlying cause of death (e.g., coronary artery disease) and the manner of death (e.g., natural accident, suicide, homicide or undetermined.)  If additional information surrounding the person’s death becomes known later, most states allow the certificate to be amended. 

When all information is complete, he doctor, nurse practitioner, coroner, or forensic pathologist who completes the form signs it to certify the death. The completed death certificate is then filed with the Bureau of Vital Statistics in the location where the death occurred. This may be done electronically or via a paper copy of the certificate depending on the location where the person died. 

Obtaining a certified copy of a death certificate

A family member or eligible person over the age of 18 can apply for a certified copy of the death record, or certificate. The certificate will have a raised seal of the office issuing the record. A photocopy will not be accepted for any official or legal use. It’s best to request several copies, as you may need to submit them to various entities, including the deceased person’s banking institutions, credit card companies, life insurance companies, Social Security, and more. 

Policies about who can obtain a certified copy of a death certificate, the cost of the copies and other requirements vary by state. Search the interactive database on the website of the National Center for Health Statistics to learn about specific statutes in your state. 

Sources

“How to probate a will: A step-by-step guide”. FreeWill. https://www.freewill.com/learn/how-to-probate-a-will 

“U.S. Standard Certificate of Death”. CDC: National Center for Health Statistics.  https://www.cdc.gov/nchs/data/dvs/death11-03final-acc.pdf 

“Where to Write for Vital Records”. CDC: National Center for Health Statistics. https://www.cdc.gov/nchs/w2w/index.htm

Although there is no rush to call anyone immediately after your loved one dies, you will at some point need to contact a health care provider to certify the time of death. If your loved one was in hospice, that should be your hospice provider; the hospice nurse will come to your home and certify the death. If the person was not receiving hospice care, call their attending physician and inform them that your loved one has died. If you can’t reach their physician or the physician isn’t available to come to the home, you will need to call 911. As long as you have a pre-hospital DNR order or POLST available, emergency responders will not perform CPR. Nor will they attempt resuscitation if the person is obviously deceased (for example, if the body is cold and rigor mortis has begun). In some locations, a paramedic may certify death at the scene; in others, the body will need to be taken to the Emergency Room, where a physician will pronounce the person dead. 

After the death is certified by a healthcare provider, you may call the funeral home (if you’re using one) at any time. Most funeral homes have someone available 24/7 to come to your home or the hospital to pick up the body. However, some will want the death certificate completed and signed by a qualified health care provider before transporting the body, so be sure to check with your selected provider in advance. 

Keep in mind, too, that you can notify the funeral home that your loved one has died but choose not to have their body removed right away. For example, some families opt to perform natural death care rather than leave the act of caring for their loved one’s body to a funeral home. You may also choose to have a visitation and funeral in your home, with or without the help of a home funeral guide. 

Although the days and hours leading up to a person’s death are often difficult, the moment of death is usually peaceful. The person will typically take a final breath, which may be preceded by a period of irregular respirations known as Cheyne-Stokes breathing, in which they take several fast, deep breaths and then stop breathing for a time (apnea), then repeat the cycle of rapid, deep breaths followed by no breathing. This can go on for several hours. 

After the person’s last breath, you may hear an audible sigh as air escapes from the lungs. At that time, you should feel for a pulse at the side of the neck or, if that’s not possible, in the groin. (The pulse in the wrist may be absent even if the person is still alive.) Wait a full minute. If you don’t feel any pulse, the heart has almost certainly stopped. 

When the heart stops beating, circulation stops, and the person’s skin will become very pale and cool to the touch. Their eyes may be open or closed. If they are open (or if you open them), you’ll notice that the pupils (the dark part of the eye) are quite large and “fixed,” meaning they no longer change size in response to light. If you touch the eye gently, the person will not blink. The eyes will also begin to cloud over and develop a semi-opaque film. This usually happens an hour or two after death, but can occur more quickly.

When a person dies, the muscles relax, including the sphincters in the bladder and rectum. As a result, urine and/or stool may be released from the body shortly after death. The jaw will also become very slack and the mouth may fall open, especially if the person is lying on their back.

After some time (usually 2 to 4 hours), the muscles of the eyes, neck and jaw will begin to stiffen, a condition known as rigor mortis or postmortem rigidity. This stiffness will gradually spread to the entire body, peaking about 12 hours after death. After some time (usually 24 to 48 hours after death), the muscles will relax again. 

Sources

“Rigor Mortis”. ScienceDirect. https://www.sciencedirect.com/topics/medicine-and-dentistry/rigor-mortis#

“Cheyne-Stokes breathing: Definition & how to treat”. Resmed. https://www.resmed.com/en-us/sleep-health/blog/what-is-cheyne-stokes-respiration-a-brief-cheyne-stokes-definition/

Yes. If your loved one is unconscious or too weak to move of their own accord, regular repositioning can help keep them comfortable and prevent pressure sores. This is particularly important during the pre-active dying phase, since it can last for several weeks or more, and pressure ulcers can develop very quickly during this time. Also known as decubitus ulcers, these wounds can be devastating and can quickly progress from a small, reddish discoloration of the skin to an open sore that exposes fat, tendons, and — eventually — bone. 

To prevent skin breakdown in your dying loved one, good skin care is essential. When you turn your loved one, gently massage any pressure points, paying particular attention to bony protuberances such as elbows, heels, shoulder blades and hips. Applying a non-cosmetic emollient cream such as shea butter, cocoa butter or vaseline can help keep the skin moist and promote skin integrity as well. You may also want to speak with your doctor or hospice provider about getting your loved one heel and elbow protectors. Usually made from gel, foam, or synthetic lambswool, these devices are easy to apply and remove and help offload pressure on the affected areas. 

Be aware, too, that if turning your loved one causes pain or discomfort, you can ask your hospice provider or doctor about adding an “as needed” pain medication that you can administer shortly before they’re scheduled to be turned. This is a good idea even if your loved one is receiving pain medication on a round-the-clock basis, since turning and repositioning can cause baseline pain to escalate. A short-acting opioid such as Fentora (a form of the synthetic opioid fentanyl that dissolves in the patient’s mouth) or hydromorphone (Dilaudid) are usually good choices because they act quickly and stay in the system for a relatively short time, says WebMD. 

Sources

“Bedsores (pressure ulcers)”. Mayo Clinic. https://www.mayoclinic.org/diseases-conditions/bed-sores/symptoms-causes/syc-20355893 

“Fentanyl transdermal (Duragesic) – Uses, Side Effects, and More”. WebMD. https://www.webmd.com/drugs/2/drug-6253/fentanyl-transdermal/details 

“Pain Relief & Breakthrough Pain”. WebMD. https://www.webmd.com/pain-management/features/pain-relief-breakthrough-pain

Although it’s natural to be concerned when your loved one stops eating and drinking, it’s not a good idea to try to force a dying person to eat or drink. Food is a source of physical energy, and a dying person no longer needs energy for the activities they once enjoyed. As bodily functions slow down, the need and desire to eat diminish naturally. And as difficult as it may be to do so, you need to honor this truth. 

The main goal of caring for someone who is dying is to keep them as comfortable as possible. A large part of that task involves understanding and respecting the physical changes that are taking place. Many loved ones mistakenly believe that food and fluids can “revive” a dying person, or help them “keep their strength up.” But this simply isn’t true. In fact, forcing a dying person to eat or drink may actually be harmful. Even a small amount of food in your loved one’s stomach may cause bloating, indigestion, nausea or even vomiting. And forcing fluids on someone whose kidneys are shutting down may increase discomfort rather than alleviating it. 

Instead of trying to encourage your loved one to eat or drink, offer them tiny sips of water from a spoon or a syringe (if they are able to swallow). Cleaning their mouth frequently with cotton swabs dipped in ice water or toothettes may also help by keeping mucus membranes moist. 

With that being said, if your loved one does seem interested in food or liquids, it’s fine to let them try to eat a small amount of foods they may enjoy. Chewing will probably be difficult, so offer them soft foods such as oatmeal, mashed potatoes, eggs or yogurt, or liquids such as milk shakes, soups or ice cream. To prevent choking or accidental aspiration, feed the person while they are sitting up and only in small amounts. Remember, too, that a dying body doesn’t need a healthful diet. If your loved one wants to eat chocolate pudding five times a day, that’s completely fine.

Yes, you should continue to talk to your loved one, even if they are no longer able to respond. When someone is near death, various body functions will begin to decrease, and this may mean that it may become more difficult to awaken your loved one or that they may shift in and out of consciousness. Even so, most healthcare professionals agree that the best course of action is to always assume that your loved one can still hear you.

A study conducted in 2020 monitored the brain activity of terminally ill patients for two years. The patients were fitted with an electroencephalogram (EEG) cap that recorded the brain’s electrical impulses. Due to the nature of the patient population, it was difficult for the researchers to maintain a significant sample size to achieve generalizability. However, findings indicated that even when patients had shifted into an unresponsive state, they could maintain brain activity indicative of concentration and consciousness. This level of maintained consciousness may ultimately suggest that patients could hear and process their surroundings despite being unresponsive.

Even if your loved one is no longer able to respond to you, your words and your presence still have significant meaning and can provide a sense of comfort. You can express your love for them, reflect on your shared memories, or simply remind them that you are there for them during these final moments. If you have decorated the room or made an effort to create a more peaceful environment, you can describe what’s in the room. Ultimately, engaging in the way that feels the most natural and supportive is always a suitable way to honor your loved one. 

Sources

“Even After Dying Loved Ones Become Unresponsive They Can Still Hear You: UBC Study.” Capital Daily. https://www.capitaldaily.ca/news/ubc-study-hearing-death 

“Hospice Care: Symptoms of Approaching Death.” University of Rochester Medical Center. https://www.urmc.rochester.edu/encyclopedia/content.aspx?contenttypeid=34&contentid=23507-1 

“Death rattle” is the term used to describe the gurgling sound that many people make when they are actively dying. Although it can be distressing to family members and others at the bedside, it is simply the sound of air passing through saliva or mucus that has built up in the back of the person’s throat. Since swallowing or coughing is often difficult for those who are dying, these secretions collect in the airway and are difficult to clear. 

This sound may be likened to the noise you hear when the last of liquid in a glass is sucked up through a straw.

Death rattle occurs in about half of people who are close to death, usually within the last 24 to 72 hours of life. Research confirms it is not a sign of respiratory distress for the person who is dying. Most often, this sound happens naturally when the patient is unconscious and unresponsive while breathing with an open mouth. However, it may be present at other times. 

Death Rattle’s Effect on Families

Witnessing a death rattle can be unnerving for families. In a recent study, researchers looked at the impact of the experience on loved ones and found that a majority of relatives found the symptom to be upsetting. Their concerns included subjective issues  (e.g., it sounds “horrific” or “inhuman” ) and objective concerns about the suffering of the dying person, whom several participants said seemed like they were “suffocating.” Many family members also felt the death rattle lasted an inordinate amount of time. As one participant said “… everybody is saying that when you hear this rattle, death is near…Two days then is a long time …”

It should be noted that not all families who were interviewed for this study found the death rattle burdensome, and the sample size was small (only 19 of 95  families agreed to be interviewed.) However, the death of a loved one is already traumatic. Healthcare providers should seek solutions to ease the suffering of family members to the greatest extent possible during this difficult time. 

In that regard, education is a key component of helping family members cope. For example, bedside nurses and hospice staff can reassure the family that the patient is not suffering despite the disturbing sound. However, if the family is in severe distress, providers can try medications that may reduce saliva production and relieve the death rattle a bit. Anticholinergic drugs such as atropine and scopolamine are often used for this purpose, although their efficacy varies significantly. There is also concern among some clinicians that their use may induce unpleasant side effects for the dying patient, such as dry mouth, urinary retention and confusion. However, it has not been determined that patients in the final stages of dying actually experience these effects. 

Fostering better understanding for families

While healthcare providers grapple with the challenge of helping loved ones cope with the death of their loved one, some end-of-life clinicians have taken to social media to try to educate the public about what it’s like to watch a loved one die. HOSPICE NURSE JULIE, for example, offers a video on her YouTube channel that demonstrates the death rattle and attempts to clarify what the sound means. We invite you to watch the video if you would like to learn more. 

Sources

“Death Rattle”. National Cancer Institute. https://www.cancer.gov/publications/dictionaries/cancer-terms/def/death-rattle 

“Death rattle is not associated with patient respiratory distress: is pharmacologic treatment indicated?” Journal of Palliative Medicine. https://pubmed.ncbi.nlm.nih.gov/24047451/ 

“Understanding relatives’ experience of death rattle”. BMC Psychology. https://bmcpsychology.biomedcentral.com/articles/10.1186/s40359-020-00431-3 

“Atropine”. StatPearls. https://www.ncbi.nlm.nih.gov/books/NBK470551/ 

“Scopolamine Transdermal Patch”. Medline Plus. https://medlineplus.gov/druginfo/meds/a682509.html 

“Assuaging listener distress from patient death rattle”. Annals of Palliative Medicine. https://apm.amegroups.org/article/view/21469/22764 

Palliative sedation and euthanasia are two distinct end-of-life options. Palliative sedation is a process in which a patient with refractory symptoms is given medication to initiate a state of reduced awareness, even unconsciousness, in order to relieve symptoms and suffering. Euthanasia involves actively ending the life of a terminally ill patient to relieve suffering. It is illegal in most countries and is highly controversial due to its complex moral ambiguity.

Palliative sedation falls under the umbrella of palliative care, which involves easing a patient’s discomfort and pain, both physical and emotional, and is focused on improving quality of life rather than extending it. Though palliative sedation can be used to ease the pain and distress associated with an illness, it is one of the most highly debated palliative care practices, and there are ethical considerations around its use.

Ethical concerns of palliative sedation

Although palliative sedation and euthanasia are distinct treatment options, there are a number of ethical considerations around the use of palliative sedation that have yet to be resolved. These include:

Reduced patient autonomy

Because palliative sedation can involve inducing diminished or absent patient awareness, there are concerns that the recipient will be unable to change their mind or give informed consent about the treatment once it is underway, and that lucidity may not return.

Use in non-physical suffering

End-of-life existential distress can cause significant suffering in terminally ill patients. However,  because there is no consensus in defining or gauging the level of suffering — nor in measuring the effectiveness of treatments — the role of palliative sedation in this regard is controversial. The American Academy of Hospice and Palliative Medicine recommends exploring “vigorous multidisciplinary efforts” that include professional input from outside the patient’s palliative care team, such as from therapists, psychologists, or spiritual counselors. 

Potentially hastening death

Palliative sedation can result in a greater risk of respiratory depression, aspiration and heightened agitation from delirium. However, because these are side effects of the treatment and not the goal, many clinicians argue that the practice is appropriate as long as the patient, their family and the medical team are aware of the risks. Additionally, several (admittedly aged) studies indicate that palliative sedation does not hasten death, but rather provides a more comfortable death experience. 

Continuous deep sedation until death (CDSUD)

One of the most extreme forms of palliative sedation, CDSUD is also one of the most controversial. Ethical questions arise surrounding the very deep level of sedation, and that the treatment is not reversible. Further, studies have shown this course of treatment is often requested by patients after a request for euthanasia is rejected, and could be prompted by existential distress or depression.

Despite the not-infrequent conflation of palliative sedation and euthanasia, they remain two distinctive treatment options — both with their fair share of ethical debate. Palliative sedation remains the more nebulous concept of the two, with a lack of consistent definitions and treatment protocol another part of the ethical concerns. 

Any decisions regarding palliative sedation should be taken with due consideration for the individual’s wishes and those of their family, alongside the input of a palliative care medical team. With careful planning and open communication, patients can receive the end-of-life care, including palliative sedation, that best meets their needs.

Sources

“Ethical challenges in palliative sedation of adults: protocol for a systematic review of current clinical practice guidelines”. BMJ Open. https://bmjopen.bmj.com/content/12/7/e059189 

“Palliative Sedation: The Ethical Controversy”. Medscape. https://www.medscape.org/viewarticle/499472 

“Palliative Sedation”. American Academy of Hospice and Palliative Medicine. https://aahpm.org/advocacy/where-we-stand/palliative-sedation/ 

“Palliative Sedation in Patients With Terminal Illness”. StatPearls. https://www.ncbi.nlm.nih.gov/books/NBK470545/ 

“Palliative sedation therapy does not hasten death: Results from a prospective multicenter study”. Annals of Oncology. https://www.researchgate.net/publication/26307271_Palliative_sedation_therapy_does_not_hasten_death_Results_from_a_prospective_multicenter_study 

“Deep continuous patient-requested sedation until death: a multicentric study”. BMJ Supportive and Palliative Care. https://spcare.bmj.com/content/13/1/70 

Rallying before death, sometimes called a death rally or terminal lucidity, refers to a phenomenon where a dying person experiences mental clarity or a sudden burst of energy before death. Some individuals may seem physically stronger and take an interest in eating and drinking again, whereas others may seem more aware of their surroundings or express a desire to make plans. It is not uncommon for people who are rallying before death to start searching for their belongings, discuss funeral planning, try to make amends with those with whom they have strained relationships, or even request to start drafting important end-of-life documents. The period of rallying may last for moments or even days.

Families and loved ones of those who are dying are frequently uncertain of the implications associated with this sudden renewed energy. Although it is often a key indicator that death is approaching, many people become hopeful that it means their loved one is feeling better and may recover, therefore delaying death. It is in these moments that it can be helpful to talk with hospice staff or a loved one’s care team to gain greater insight into the significance of terminal lucidity and what it may mean for the remainder of the time before death. 

There are many physiological, psychological, and spiritual theories regarding what causes people to rally before death. However, to date, no in-depth research exists confirming them since such research is limited by ethical concerns. Although the exact reasons remain unknown, it is a phenomenon that can provide a final opportunity for dying individuals to gain closure in relationships, reflect on their lives, and say goodbye to loved ones. 

Sources 

“When Loved Ones Rally Before Death”. Aging Care. https://www.agingcare.com/articles/when-loved-ones-rally-before-death-185452.htm 

“The Mystery of End-of-Life Rallies”. New York Times. https://www.nytimes.com/2018/07/24/well/the-mystery-of-end-of-life-rallies.html 

Comatose refers to a state of deep unconsciousness where your loved one has become unresponsive. When someone becomes unconscious when they are nearing the end of life, it typically means that they are approaching death. Your loved one will not be able to open their eyes, communicate, respond to touch, or awaken from this state of unconsciousness. Depending on how your loved one’s brain has been affected, they may also need a respirator to continue breathing. Common symptoms of a coma can include:

• Closed eyes 
• Irregular breathing 
• No response to painful stimuli 
• No response from limbs
• Depressed brainstem reflexes (i.e., pupils do not respond to light exposure) 

There are many potential causes of a coma. The cause of your loved one’s comatose state will likely depend on their medical history and the circumstances surrounding their health. Common causes of a coma may be: 

• Head trauma 
• Brain hemorrhages
• Swelling of the brain
• Lack of oxygen 
• Poison
• Endocrine disorders (diabetes or hypothyroidism)

You may notice that your loved one may have very slight and spontaneous movement in their limbs or their fingers. These are reflex movements and are generally infrequent. It is important to understand that although it is possible to recover from a coma in certain circumstances, some individuals who are in a coma never regain consciousness and transition into a vegetative state or die. Many individuals who become comatose either in hospice or when they are nearing the end of life will transition toward death.

It is important to understand that the outcome of a coma will vary by case. Identifying the cause of the coma and any other contributing factors can provide additional insight into potential chances for recovery. Ultimately, discussing your loved one’s prognosis with their healthcare provider will be necessary to gain a better understanding of their treatment plan and any recommendations. 

Sources 

“When death is near: Signs and symptoms”. Hospice Foundation of America. https://hospicefoundation.org/when-death-is-near-signs-and-symptoms/ 

“Coma”. Mayo Clinic. https://www.mayoclinic.org/diseases-conditions/coma/symptoms-causes/syc-20371099 

“Coma.” eMedicine Health. https://www.emedicinehealth.com/coma/article_em.htm

Near death awareness (NDA) refers to a phenomenon where individuals approaching the end of life begin to express a heightened awareness of their impending death. This heightened awareness often happens within the final week, days, or hours of life. During this period, individuals may find that new perceptions and interactions begin to emerge as they draw closer to their death. Perceptions and interactions that are common in near-death awareness may include: 

• Seeing loved ones who have died 
• Feeling more connected to a spiritual presence 
• A greater sensation of peace 
• Seeing religious figures or God 
• Seeing another realm (i.e., paradise, heaven, etc) 
• Knowledge of when they will die

Individuals who are experiencing near death awareness may communicate with the presence of someone who has died or may actively describe the surroundings of other realms that are not visible to those who are present in the room with them. It is not uncommon for them to make special requests during these interactions. Some individuals may begin to use more imaginative or visionary language regarding their death. They may describe that they are preparing to go on a trip or that they are going to be traveling soon to reunite with a loved one. Although many people report a greater sense of peace, some people experience heightened anxiety and distress. 

It is important for caregivers and loved ones to understand the phenomenon of near death awareness since it can enable them to provide more supportive end-of-life care. For example, creating a compassionate environment that encourages the dying person to share their experiences allows loved ones and caregivers to validate their emotions and further promote a sense of peace. Ultimately, approaching near-death awareness more intuitively and respecting the experiences involved can lead to greater support of the physical, emotional, and spiritual aspects of dying. 

Sources 

“When Death is Near: Signs & Symptoms”. Hospice Foundation of America. https://hospicefoundation.org/when-death-is-near-signs-and-symptoms/ 

“What is Near Death Awareness and How Do I Respond?” Everyone Dies. https://every1dies.org/2021/what-is-near-death-awareness-and-how-do-i-respond/

Although there are several reasons unrelated to death and dying that may cause an elderly parent to sleep more than usual, increased sleep is also common at the end of life, and can emerge as early as 3 months prior to death. Individuals who are actively dying or approaching the end of life tend to experience general fatigue due to lower energy. This means that even if an elderly parent is sleeping more than usual, they may also remain drowsy during waking hours or may mention that they feel very tired. Some individuals may experience varying levels of consciousness throughout the day for this same reason.

Generally speaking, it is normal for dying individuals to sleep more frequently and for longer durations. They may also become more difficult to wake when they have fallen asleep or may fall asleep in settings or situations that would normally be uncommon, such as sleeping while sitting at the table for dinner. Since sleeping patterns can change significantly, this can also mean that they are awake during hours when they would usually be sleeping. However, it is important to note that increased sleep doesn’t always mean that your elderly parent is dying, since there are other indicators or symptoms that generally need to be present.

In general, aging often decreases the amount of restful sleep that individuals experience, and that may make seniors and elderly individuals feel substantially more tired throughout the day. Changes in sleep patterns can also occur due to chronic health conditions or unpleasant side effects from the medications that are used to manage those conditions. Some common examples of conditions that can negatively impact sleep include Alzheimer’s disease, dementia, sleep apnea, depression, PTSD, and anxiety. Additionally, ineffective pain management can make it very difficult to achieve restful sleep even if someone is quite tired. Contact a healthcare provider if changes to sleep patterns and frequency begin to disrupt daily routines or seem to be a cause for concern.

Sources

“What to Expect When Your Loved One Is Dying”. WebMD. https://www.webmd.com/palliative-care/journeys-end-active-dying

“Early and late signs that precede dying among older persons in nursing homes: the multidisciplinary team’s perspective”. BMC Geriatrics. https://bmcgeriatr.biomedcentral.com/articles/10.1186/s12877-018-0825-0 

“Why Does My Elderly Loved One Sleep All Day?” Aging Care. https://www.agingcare.com/articles/reasons-elderly-sleep-all-day-156606.htm 

Transitioning to death refers to the initial phase when your loved one’s health begins to decline and shift into active dying. Although the length of time associated with the dying process can vary for everyone, most individuals will die within a matter of days or hours once they have transitioned into active dying. During this time, your loved one’s body will change as certain functions and organs begin to shut down. These changes can manifest in different ways, but some of the most common symptoms observed in transitioning to death include: 

• Increased confusion or restlessness 
• Decreased appetite and thirst
• Increased drowsiness 
• Difficulty swallowing 
• Breathing changes 
• Bladder and bowel changes 
• Changes in skin color 
• Changes in temperature
• Increased agitation 
• Communicating with deceased loved ones or having visions 
• Swollen ankles or feet 
• Increased pain or distress 
• Secretion build-up in mouth or throat 
• Audible “rattling” sound from throat 

While physical changes and symptoms are often primary indicators that someone is transitioning to death, there are other indicators as well. People who are dying often experience emotional, mental, and spiritual changes. Depending on the level of awareness that your loved one can maintain during this phase, they may experience emotions such as anxiety, fear, peace, or acceptance. Some individuals express feeling more deeply connected to a higher power or divinity, while others share visions of different places and people who previously died. It is common for most people to reflect on the personal significance and meaning of their lives and the experiences they have had.

It is important to understand that factors such as an individual’s overall health, the potential cause of their death, and their preferences and beliefs can all influence the experience of transitioning to death. Since transitioning can range from hours to days, it is crucial to have consistent care and support throughout the process to ensure your loved one is as comfortable as possible. While transitioning to death is a deeply personal and meaningful period to share with your loved one, it is often very challenging to observe. As such, working together closely with a care team or other healthcare professionals as well as family members and loved ones can ensure that you maintain a solid support system while emphasizing a peaceful transition for your loved one. 

Sources

“Hospice Care: Symptoms of Approaching Death.” University of Rochester Medical Center. https://www.urmc.rochester.edu/encyclopedia/content.aspx?contenttypeid=34&contentid=23507-1 

“Signs of Approaching Death.” Hospice Foundation of America. https://hospicefoundation.org/Hospice-Care/Signs-of-Approaching-Death 

“What is Transitioning in Hospice?” Guaranteed Hospice. https://www.guaranteedhospice.com/blog/what-is-transitioning-in-hospice

Ketosis is a metabolic state that occurs when a person hasn’t consumed enough carbohydrates for the body to transform into energy. Since the body is unable to burn carbohydrates, it begins to burn fat instead. When someone is actively dying and stops eating, their body will usually transition into a state of ketosis, which is characterized by several indicators, including:

• Loss of appetite
• Fatigue
• Dry mouth
• Decreased urination 
• Bad breath 
• Diarrhea or constipation 
• Weight loss 
• Insomnia 

It’s important to note that lack of appetite and weight loss may also be part of the body’s natural process of shutting down as the person approaches death. Ketosis may also cause increased thirst, although some individuals may experience loss of thirst in relation to loss of appetite. 

When a loved one with a terminal illness begins to express a lack of interest in eating or drinking, this is often the first sign that their body is slowly beginning its transition toward death. This can be difficult for family and loved ones to accept initially, and so they may begin to find creative ways to incentivize eating. This is sometimes achieved by offering a favorite snack or beverage that wouldn’t normally be a part of a balanced diet. While this attempt to encourage eating can work sometimes, it is generally a temporary solution and eventually ceases to prevent the recurrent loss of appetite.  

One concern that often arises in these scenarios is the fear that a loved one will starve to death or die from dehydration since they aren’t interested in food or water anymore. They may also begin to worry that their loved one is uncomfortable since the tendency is to associate a lack of food with hunger pangs. However, in a state of ketosis at the end of life, much of the body’s processes are shutting down. Suppression of appetite typically occurs in conjunction with suppression of hunger pangs, and the brain starts releasing endorphins to block pain. Ketosis may even produce a sense of euphoria or sleepiness as death becomes more imminent, which ultimately helps them to feel more comfortable and at peace prior to death. 

Sources

“Ketosis”. Cleveland Clinic. https://my.clevelandclinic.org/health/articles/24003-ketosis 

“Sign of Impending Death in Hospice: Loss of Appetite”. Suncrest Hospice. https://www.suncrestcare.com/sign-of-impending-death-in-hospice-loss-of-appetite/ 

“Diminished Appetite at End of Life”. Today’s Geriatric Medicine. https://www.todaysgeriatricmedicine.com/archive/JA22p14.shtml 

“Loss of Appetite When Dying Explained”. Cura-HPC. https://www.curahpc.com/blog/posts/view/148/loss-of-appetite-when-dying-explained 

“I’m a nurse – here’s what really happens just before you die and why you shouldn’t be scared”. The Sun. https://www.the-sun.com/health/7763951/nurse-death-ketosis-euphoric/ 

A Kennedy Ulcer, or Kennedy terminal ulcer, is a sore that rapidly develops and progresses as terminally ill patients near the end of life. Kennedy ulcers can appear during a patient’s last days, mainly at the sacrum, or tailbone. Their onset is very swift. They first appear as a small spot in the morning, then fully progress into large black blister-type sores by mid-afternoon that same day. Kennedy ulcers are sometimes called “3:30 Syndrome” by nurses and physicians, reflecting the time of day they seem to develop.

This type of ulcer was initially established as its own category of wound in 1989 by nurse practitioner Karen Lou Kennedy. While their exact cause remains unknown, medical experts believe that Kennedy ulcers develop due to tissue death. The skin is the body’s largest organ, so not unlike other organs, skin cells can shut down and fail near the end of life.

Kennedy ulcers are not bedsores, which are ulcers that develop due to continuous pressure on an area of the body for a prolonged period of time. Also called decubitus ulcers or pressure sores, bedsores occur due to compromised circulation and follow a typical pattern of tissue injury once they occur. Kennedy ulcers look very similar, but when examined under a microscope, the skin cells are intact. According to the National Pressure Injury Advisory Panel, further studies are needed to better understand why they occur.

Symptoms of a Kennedy Ulcer

To date, there is little research available on what causes Kennedy ulcers or how to differentiate them from a bedsore. However, they differ so greatly in their clinical presentation from any other type of ulcer that nurses who care for the dying have outlined some ways to recognize them. These include the following criteria:

• Rapid Onset: a blister-like wound that typically develops within hours of onset
• Location: most commonly develops on the sacrum (low end of spine) or tailbone (coccyx). However, they may also appear on other areas of the body, including the calf, heels, arms, or elbows.
• Irregular Shape: most often described as pear-shaped or shaped like a butterfly
• Color: bruise-like shades of black, yellow, or red that darken quickly after onset 
• Surrounding appearance: The skin surrounding the discolored area may be soft to the touch or loose.

Treatment and Prevention

Unlike bedsores, which can usually be prevented with excellent skin care and careful attention to positioning, Kennedy ulcers are thought to be unavoidable. They typically occur very shortly before a patient dies, so there’s little that can be done to help them heal. These ulcers can be painful, so treatment is aimed at patient comfort. Preventing pressure on the sore with special bandages, cushions, or positioning may help, and pain medicine is indicated if the patient is in distress. 

Importantly, caregivers should understand that nothing they did or did not do caused the ulcer to develop. Rather, like other signs of active dying, a Kennedy ulcer is a signal that the person’s body is shutting down. 

Sources

“What Is Kennedy Terminal Ulcer?” WebMD. https://www.webmd.com/skin-problems-and-treatments/what-is-kennedy-terminal-ulcer 

“NPIAP Tackles Issue of Skin Changes in Actively Dying Patients”. National Pressure Injury Advisory Panel. https://npiap.com/news/590421/NPIAP-Tackles-Issue-of-Skin-Changes-in-Actively-Dying-Patients.htm 

“Bedsore”. National Cancer Institute. https://www.cancer.gov/publications/dictionaries/cancer-terms/def/bedsore

Holding space for someone involves creating an environment of openness and unconditional acceptance. It requires leaving one’s ego at the door to foster a climate where the other can share whatever feelings or thoughts they have without being judged or censured. Holding space for someone who is dying can provide comfort, compassion, and a sense of connection that allows the individual to feel seen and heard in their final moments.

Holding space isn’t about providing solutions, advic,e or opinions, but is instead focused on offering emotional support and gentle presence, and allowing people to express the full range of their emotions in a safe environment. It can help open communication channels for meaningful conversations and provide the opportunity to come to terms with difficult issues. 

Ways to hold space

When holding space for someone, including in a situation where someone is dying, chances are they are feeling vulnerable. So it’s important to be aware of how your presence — including your language and body language — could impact them. Gentleness and good listening reign. To create an atmosphere of safety, security and emotional support, consider the following:

• Show up fully: Be present not just in a physical sense, but emotionally and mentally. Put aside all external distractions and give the person your undivided attention.
• Leave your ego out: This is a time to serve others and is not about you. A sense of humility and suspended self-importance is necessary in allowing another person to feel safe.
• Listen actively: Do not interrupt or try to offer solutions — just listen to what they are saying and help validate their feelings. At times, silence can be comforting. Don’t feel the need to fill every moment with words.
• Be nonjudgmental: Accept the person and their emotions without passing judgment. This can provide them with the freedom to express themselves in their own time and way.
• Practice patience: Holding space can be a long journey. Allow the person to express their feelings and process emotions at their own pace.
• Make them feel empowered: Even if you are involved in making decisions about their care, it’s important to honor their wishes as much as possible. Relatedly, overloading someone with information and instructions can feel overwhelming — be mindful of how much someone can process. 
• Maintain an open heart: Show compassion and empathy towards the person. Make sure they know that they are loved and cared for.
• Use comforting body language: Ensure your body language is soft, welcoming, and comforting. Your physical presence can communicate as much or more than words.

Holding space when someone is dying is a beautiful way to honor their life, to share in the experience, and provide understanding and love. It’s a powerful gift that can help bring peace, comfort, and closure to all those involved. 

Sources

“What It Means to Hold Space for Someone”. Tragedy Assistance Program for Survivors. https://www.taps.org/articles/27-2/hold-space-for-someone 

“Holding Space”. Mirasol Health. https://hospicecarelc.org/holding-space-quality-end-of-life-care/ 

End-of-life visions or deathbed visions are paranormal experiences in which a dying person sees something that isn’t apparent to others in the room. According to many experts in hospice and palliative care, they are extremely common and may occur right before death or weeks earlier. The visions are often of family members who have died (in one study, reported by Marilyn A. Mendoza, Ph.D., in Psychology Today, 57% of deathbed visions fell into this category). The person seen in the vision is very often the patient’s mother or father. Visions of spiritual or religious symbols, such as angels and deities, are also quite common, even in people who have no particular religious beliefs, Mendoza said. Almost universally, the visions are reported as comforting by the people who have experienced them. 

Deathbed visions may also be accompanied by extremely lucid dreaming. According to a study conducted by Dr. Christopher Kerr, M.D., Ph.D., at the Center for Hospice & Palliative Care in Buffalo, New York, nearly 90% of dying patients have at least one dream that they describe as more vivid than their normal dreams. Sometimes, Kerr reports, these dreams seem so real that they are perceived as waking reality.

Most of the dying people Kerr interviewed reported dreams of reuniting with loved ones who had already died, or getting ready to travel somewhere. A smaller number reported dreaming about something that had happened in their past. According to Kerr, these dreams very often had significant emotional significance to the dying, most of whom found them both comforting and meaningful. 

Interestingly, recent animal studies show that the brain becomes highly synchronized in the moments before death. According to Jimo Borjigin, Ph.D., a neuroscientist at the University of Michigan, this synchronization is known as “coherence” and is associated with high-level, focused, cognitive activity in the human brain. This increased coherence in the dying brain seems to be the result of a powerful surge of neurochemicals that occurs (at least in animals) right before death. This surge may be behind the bright lights and sudden, intense clarity of thought that cardiac arrest survivors report, Borjigin believes. 

Sources 

“Deathbed Visions: Part I”. Psychology Today. https://www.psychologytoday.com/us/blog/understanding-grief/201610/deathbed-visions-part-i 

“End-of-life dreams and visions: a longitudinal study of hospice patients’ experiences”. Journal of Palliative Medicine. https://pubmed.ncbi.nlm.nih.gov/24410369/ 

“What It Feels Like to Die”. The Atlantic. https://www.theatlantic.com/health/archive/2016/09/what-it-feels-like-to-die/499319/

The pre-active phase of dying is a period of several weeks or perhaps a month that precedes death. 

During the preactive phase of dying, the body is beginning to shut down, and digestion, brain and kidney function begin to deteriorate. These functions typically slow down in a predictable pattern, says James Hallenback, a palliative care physician at Stanford University, in his book “Palliative Care Perspectives.” “First hunger and then thirst are lost,” Hallenback writes. “Speech is lost next, followed by vision. The last senses to go are usually hearing and touch,” he adds.  

Physical Signs of Pre-Active Dying

• Decreased food and fluid intake due to the natural diminishment of hunger and thirst
• Lower temperature and blood pressure
• Pale skin
• Difficulty swallowing, especially pills. Many people at this stage of dying need to take their oral medicines in liquid form. Medicines that are not indicated for comfort are usually stopped at this time.
• Decreased urine output and fewer bowel movements
• Swelling of the hands or feet due to diminished kidney function and the accumulation of fluid in the extremities. 
• Increased sleepiness, less interaction with loved ones
• Confusion, agitation or restlessness. This may include behaviors such as “picking” at the covers, thrashing about, or trying to get out of bed without help.
• Breathing changes. Breathing may initially be rapid and shallow or irregular and labored.
• Slow wound healing. The skin is particularly vulnerable during this time, and bedsores can happen seemingly overnight. Frequent turning, gentle massage and soothing skin lotions can help prevent the skin from breaking down. 

Behavioral and Cognitive Signs of Pre-Active Dying

The brain, like the rest of the body, doesn’t die all at once. As different parts of the brain begin to fail, the dying person may experience hallucinations or especially vivid dreams. It is not uncommon during this period for the dying person to say they have seen loved ones who already died or have “conversations” with the dead. Additionally, the person may:

• Verbally acknowledge that they are dying
• Ask to see family members and loved ones one last time. 
• Withdraw from those around them and seem to be “in another world”
• Speak incoherently, often to no one in particular
• Near death awareness — an acute sensitivity to the reality that death is near

These behaviors can be alarming to loved ones, but they are very common and merely signs that the brain is beginning to shut down. 

Additionally, some individuals will experience a period of decreased social interaction before the physical changes associated with pre-active dying begin. This is typically a time when the person begins to consider their mortality and accept that death is near. Many people begin to withdraw from friends and loved ones and may even refuse visitors during this time as they come to terms with the reality that their life is coming to an end. Some may perform a formal or informal life review, in which they recollect and evaluate important memories and events from their lives. As part of this process, some dying persons will also work towards a sense of closure by reaching out to loved ones to reconcile, express love and gratitude, ask for forgiveness, and to remedy old hurts. 

Sources

“Life Review and Life-Story Work”. The Encyclopedia of Adulthood and Aging. https://onlinelibrary.wiley.com/doi/full/10.1002/9781118521373.wbeaa209 

Terminal agitation is a state of restlessness that may occur as a terminally ill patient nears the end of life. This type of restlessness most often occurs within the last few days prior to death, but may also appear sooner. It can be brought on by emotional or physical distress caused by worry or fear of death, advanced stages of disease, or sometimes medications. 

Symptoms can differ and vary in intensity, but the most common indicators of terminal agitation include some combination of the following: 

• Confusion – disoriented, easily distracted; an inability to concentrate
• Anger – may exude aggressive behavior or outbursts like yelling or shouting
• Nervous fidgeting – unable to relax or settle down; may pull blankets off or tubes out
• Sleep disturbances – changes to sleep patterns; may sleep during day and be up at night
• Unusual behaviors – abnormal personality traits, short-term memory problems 

Terminal Delirium Versus Terminal Agitation

In more severe cases of terminal agitation, delirium is present. This means that the person displays an inability to focus or respond to cues while appearing withdrawn. They may have trouble recalling or understanding words or ramble nonsensically. Delirium can come on quickly, usually within hours or days. The degree of symptoms may be worse at night or in unfamiliar settings such as a hospital. 

Someone with delirium generally displays more intense behavioral changes that may include some or all of the following: 

• Signs of anxiety, distrust, or fear
• Extreme states of elation or anger
• Combative or restless behavior
• Hallucinations or delusions 

Managing Terminal Agitation and Delirium

In most cases, initial management of terminal agitation is aimed at controlling symptoms of restlessness and anxiety. Sometimes simply touching the person, smoothing their hair or holding their hand can help them calm down. Playing soft music or singing and talking to the person in a soft, calm voice may also help. Weighted blankets may be beneficial as well. 

If agitation persists or becomes severe, caregivers should notify the hospice provider so an assessment can be made. Sometimes what appears to be terminal agitation is actually a physical issue, such as a distended bladder, fever, severe dehydration, oxygen deprivation, constipation, or undertreated physical pain. It may also be related to medication side effects, especially if new medicines have been recently introduced. Psychosocial issues may also play a role, especially if the dying person has unresolved interpersonal conflicts or spiritual concerns. 

For some patients, medications are necessary to control the symptoms of terminal agitation and keep the person safe. If caregivers suspect the person is in pain, pain medicine such as morphine can be initiated or increased. Benzodiazepines, such as lorazepam (Ativan) or midazolam (Versed) may also be useful. In cases of terminal delirium, an antipsychotic such as haloperidol (Haldol) or an atypical antipsychotic such as olanzapine, risperidone, or quetiapine may be used. Unfortunately, all of these medications may sedate the patient significantly, making it difficult, if not impossible, for family and loved ones to communicate with the dying person in the days or hours before death. However, the benefit of keeping the person quiet and comfortable often outweighs that risk. 

Sources

“Understanding and Recognizing Terminal Restlessness”. Heathline. https://www.healthline.com/health/terminal-restlessness 

“Delirium”. Mayo Clinic. https://www.mayoclinic.org/diseases-conditions/delirium/symptoms-causes/syc-20371386 

“What is Terminal Agitation? How Hospice Treats Terminal Restlessness”. Amedisys. https://resources.amedisys.com/treating-terminal-agitation 

“Benzodiazepines”. Drugs.com. https://www.drugs.com/drug-class/benzodiazepines.html

“Olanzapine”. Medline Plus. https://medlineplus.gov/druginfo/meds/a601213.html 

“Risperidone”. Medline Plus. https://medlineplus.gov/druginfo/meds/a694015.html 

“Quetiapine”. Medline Plus. https://medlineplus.gov/druginfo/meds/a698019.html “Haloperidol”. StatPearls. https://www.ncbi.nlm.nih.gov/books/NBK560892/

Sadly, many people experience pain at the end of life. This is often a result of their underlying illness. For instance, an enlarging tumor in the abdominal cavity may cause pressure and pain in the affected area, or a malignant tumor may have spread to the brain, spinal cord or bone, causing intractable pain. In other cases, pain is a result of side effects of treatment, such as chemotherapy-induced peripheral neuropathy or severe constipation due to opioids. In still others, pain results from an underlying condition such as severe arthritis, which has been present for some time but has worsened as a result of inactivity, metabolic changes or psychological distress. 

In most instances, end-of-life pain can be effectively treated with appropriate medications such as opioids and anti-anxiety drugs. However, for a number of reasons, many patients who are nearing the end of life suffer needlessly from undertreated pain. This reality is borne out by multiple studies that have shown the prevalence of moderate to severe pain in people in hospice to be as high as 50%–60%. In cancer patients who are no longer receiving treatment, such as chemotherapy, that number is as high as 75%.

The reasons for the pervasive undertreatment of pain at the end of life are complex. Sometimes, patients and/or their families are afraid that strong painkillers, such as opioids may make the patient “worse.” Some even fear morphine may hasten death. Health care providers may also be hesitant to provide optimal pain control because they fear that giving escalating doses of strong medicines may slow the patient’s breathing and cause premature death. These fears, however, are not supported by science. Study after study has shown that providing effective pain control for someone who is dying improves their quality of life and has no effect on survival time. 

Failures of the health care system also play a role in undertreated pain. Hospice providers are often required to use only those drugs that are listed in their formulary, and overriding that mandate can be a huge hurdle that providers tend to avoid. Similarly, many insurers won’t pay for medication that isn’t on their approved list, especially costly, brand-name drugs. Or they may pay for only one form of a medicine, such as a pill, and refuse to cover a liquid form of the same drug. 

Other reasons for the undertreatment of pain in the dying are psychosocial in nature. For example, studies show that patients who don’t receive adequate pain control tend to be those who cannot effectively advocate for themselves. This includes the elderly, especially those with dementia, children, people with limited financial resources, and those who speak a language other than that spoken by their care providers. 

With that being said, every person has the right to die as comfortably as possible, and doctors and nurses have an ethical obligation to provide adequate pain control at the end of life. If your loved one is suffering from undertreated pain, ask your hospice provider to involve a pain management specialist in their care. These professionals can provide education and support to the patient, their family, and the health care team and make recommendations for interventions that will allow your loved one to experience a more comfortable death. 

Sources

“Peripheral Neuropathy”. American Cancer Society. https://www.cancer.org/cancer/managing-cancer/side-effects/pain/peripheral-neuropathy.html 

The pre-active phase of dying is a period of several weeks or perhaps a month that precedes death. 

During the preactive phase of dying, the body is beginning to shut down, and digestion, brain and kidney function begin to deteriorate. These functions typically slow down in a predictable pattern, says James Hallenback, a palliative care physician at Stanford University, in his book “Palliative Care Perspectives.” “First hunger and then thirst are lost,” Hallenback writes. “Speech is lost next, followed by vision. The last senses to go are usually hearing and touch,” he adds.  

Physical Signs of Pre-Active Dying

• Decreased food and fluid intake due to the natural diminishment of hunger and thirst
• Lower temperature and blood pressure
• Pale skin
• Difficulty swallowing, especially pills. Many people at this stage of dying need to take their oral medicines in liquid form. Medicines that are not indicated for comfort are usually stopped at this time.
• Decreased urine output and fewer bowel movements
• Swelling of the hands or feet due to diminished kidney function and the accumulation of fluid in the extremities. 
• Increased sleepiness, less interaction with loved ones
• Confusion, agitation or restlessness. This may include behaviors such as “picking” at the covers, thrashing about, or trying to get out of bed without help.
• Breathing changes. Breathing may initially be rapid and shallow or irregular and labored.
• Slow wound healing. The skin is particularly vulnerable during this time, and bedsores can happen seemingly overnight. Frequent turning, gentle massage and soothing skin lotions can help prevent the skin from breaking down. 

Behavioral and Cognitive Signs of Pre-Active Dying

The brain, like the rest of the body, doesn’t die all at once. As different parts of the brain begin to fail, the dying person may experience hallucinations or especially vivid dreams. It is not uncommon during this period for the dying person to say they have seen loved ones who already died or have “conversations” with the dead. Additionally, the person may:

• Verbally acknowledge that they are dying
• Ask to see family members and loved ones one last time. 
• Withdraw from those around them and seem to be “in another world”
• Speak incoherently, often to no one in particular
• Near death awareness — an acute sensitivity to the reality that death is near

These behaviors can be alarming to loved ones, but they are very common and merely signs that the brain is beginning to shut down. 

Additionally, some individuals will experience a period of decreased social interaction before the physical changes associated with pre-active dying begin. This is typically a time when the person begins to consider their mortality and accept that death is near. Many people begin to withdraw from friends and loved ones and may even refuse visitors during this time as they come to terms with the reality that their life is coming to an end. Some may perform a formal or informal life review, in which they recollect and evaluate important memories and events from their lives. As part of this process, some dying persons will also work towards a sense of closure by reaching out to loved ones to reconcile, express love and gratitude, ask for forgiveness, and to remedy old hurts. 

Sources

“Life Review and Life-Story Work”. The Encyclopedia of Adulthood and Aging. https://onlinelibrary.wiley.com/doi/full/10.1002/9781118521373.wbeaa209 

Morphine is a frequently prescribed medication for the treatment of end-of-life symptoms for terminally ill patients, has not been shown to hasten death when used appropriately. A comprehensive review of its use in research reports: “No studies have shown that patients’ lives have been shortened through the administration of appropriate pain medication.” Another study published in the Journal of the American Geriatrics Society shows that opioid use can increase quality of life, and possibly even extend it for some patients.

Nevertheless, the myth that morphine hastens death persists, both in the lay public and among healthcare providers. The reason for this is clear. Morphine and other opiates, when given in large doses, can cause respiratory depression, especially when therapy is first initiated.. Known in healthcare circles as the “double effect,” this forces physicians and prescribers into an ethical quagmire. “If I give the patient enough medicine to ease their pain, I may unintentionally cause side effects that shorten their life.” Further, despite the fact that ethicists agree that the foreseeable but unintended shortening of life is not a reason to withhold needed pain relief, it often results in the undertreatment of pain at the end of life. 

With that being said, research shows that patients in pain react differently to morphine than healthy people or people who use opioids to “get high.” Pain itself acts as an antagonist to respiratory depression; in other words, patients in severe pain are unlikely to experience morphine’s respiratory effects. Further, if morphine is initiated at a low dose and titrated according to patient symptoms, it has rarely been shown to affect respiration in a significant way. 

The Benefits of Morphine at End of Life

There is no “one size fits all” approach to the use of morphine for terminally ill patients. Patient safety is a concern when prescribing any pain reliever, as much as comfort or relief. This means physicians generally start patients on a low dose to minimize side effects while attempting to achieve a therapeutic goal. Depending on the person’s ability to swallow or severity of decline, morphine can be prescribed in tablet, capsule, liquid, suppository, or intravenous infusion forms. Dosage is continually reassessed by the hospice or palliative clinical team, and modifications are made according to patient outcomes or feedback.

Although morphine is not the only drug that can help reduce end-of-life symptoms such as pain and shortness of breath, it is preferred for a number of reasons. Some of these include: 

• It alleviates or lessens all types of moderate to severe pain effectively
• It is an effective treatment for shortness of breath, which can be both terrifying and debilitating
• It is inexpensive compared to other similar pain relievers
• The dosage can be easily adjusted to achieve adequate pain control
• Side effects such as itching, nausea, sedation and constipation usually can be easily managed 

Morphine, like all pain relievers, is most effective if therapy is initiated before pain becomes unbearable. In most cases, providers will order a maintenance dose to be administered every 2 to 4 hours “around-the-clock” and an additional dose in between for “breakthrough” pain.  

Side Effects Associated with Morphine

Like any medication, morphine can cause adverse effects. The most common side effects are constipation and nausea. Often additional medications are prescribed to relieve these symptoms if pain is otherwise managed well. In rare instances, someone may have an allergic reaction like hives, rash or swelling of hands, face, or mouth. In this case, alternative medication options are available.

Sedation is another potential side effect and one of the main reasons why patients or families refuse to utilize morphine when recommended. While the risk for sedation is inherent for all pain medications, starting the patient on a low dose with gradual increase can greatly reduce its sedative effects. It is important to alert the hospice or palliative team if sedation becomes apparent while taking the medication. The physician can lower the dosage and monitor the patient more closely. 

Other Fears About Morphine

Medical providers know that unwarranted fears about morphine can have a direct, negative impact on patient care. It is natural for patients or families to hesitate or ask questions when confronted with so many end-of-life care options. But irrational resistance can cause unnecessary pain for the patient. Struggling with severe pain or shortness of breath can cause adverse effects like elevated blood pressure, increased agitation or trouble sleeping. It can also result in severely diminished quality of life and a difficult death. 

While opioids are known to be addictive, they are considered a safe and effective treatment option when taken as prescribed by a doctor. Further, the risk of addiction is not an issue when a person is in the final stages of a terminal illness and actively dying. 

Cultural, ethical, or religious beliefs regarding palliative care may also cause aversions to symptom management. It is important to openly express concerns about the use of medications like morphine with family, trusted healthcare providers, or spiritual advisors.  

Sources

“Drug Fact Sheet: Morphine”. Get Smart About Drugs. https://www.dea.gov/sites/default/files/2020-06/Morphine-2020.pdf 

“Essays on Euthanasia and Physician Assisted Suicide”. International Association for Hospice and Pallative Care. https://iahpc.org/resources/publications/euthanasia-and-physician-assisted-suicide/essays-on-euthanasia-and-physician-assisted-suicide/ 

“Increasing opioid therapy and survival in a hospice.” Journal of the American Geriatrics Society. https://agsjournals.onlinelibrary.wiley.com/doi/10.1111/j.1532-5415.2007.01536.x 

“Respiratory Depression (Hypoventilation)”. Healthline. https://www.healthline.com/health/respiratory-depression 

“Opioid complications and side effects”. PubMed. https://pubmed.ncbi.nlm.nih.gov/18443635/ 

“Can pain cause high blood pressure?” Very Well Health. https://www.verywellhealth.com/can-pain-cause-high-blood-pressure-5208139 

“Agitation”. MedlinePlus. https://medlineplus.gov/ency/article/003212.htm 

“When pain interrupts your sleep”. WebMD. https://www.webmd.com/sleep-disorders/features/pain-and-sleep 

“How opioid use disorder occurs.” Mayo Clinic. https://www.mayoclinic.org/diseases-conditions/prescription-drug-abuse/in-depth/how-opioid-addiction-occurs/art-20360372 

“The importance of cultural competence in pain and palliative care”. StatPearls. https://www.ncbi.nlm.nih.gov/books/NBK493154/ 

Although not everyone who is dying is in pain, treating end-of-life pain is a crucial part of comfort care. If your loved one is in hospice, they should already have received a thorough pain assessment and, if needed, a prescription for one or more medications for pain. These medicines generally fall into one of several categories:

• Opiates — pain relievers made from the poppy plant such as morphine and codeine
• Opioids — synthetic or man-made opiates such as oxycodone, tramadol, methadone and fentanyl
• Anti-inflammatories — drugs that decrease inflammation, such as steroids (prednisone, dexamethasone) and nonsteroidal anti-inflammatory drugs (NSAIDS)
• Anticonvulsants such as gabapentin (Neurontin) and pregabalin (Lyrica) for nerve pain
• Bisphosphonates for bone pain and prevention of fractures in patients with bone cancer
• Antidepressants such as amitriptyline, and venlafaxine for nerve pain

Many patients receive a prescription for a long-acting opiate such as morphine as well as a shorter-acting opioid for breakthrough pain. Depending on the source and nature of the pain, the doctor may also prescribe one or more of the non-opioid medicines mentioned above. Always give the medicines on the schedule recommended by your hospice provider. If your loved one is still in pain, contact your hospice nurse. They will generally adjust the dose and/or frequency of the medications or add another drug. 

Remember, too, that physical pain is only one dimension of suffering that can occur during active and preactive dying. Depression, anxiety and fear can cause significant distress and exacerbate physical discomfort a great deal. Many patients benefit from the addition of an anti-anxiety medication such as Ativan or Xanax. These medicines can also help alleviate muscle spasms, which can be a source of pain as well. 

Finally, keep in mind that many nonpharmacologic interventions are very effective at alleviating physical pain. Depending on your loved one’s level of consciousness and general physical condition, you may try any of the following, all of which have been shown to lessen discomfort at the end of life:

• Therapeutic touch and massage
• Essential oil therapy
• Reiki
• Music therapy
• Bedside yoga and meditation

Simply being present with your loved one, talking to them softly, holding their hand or putting a cool cloth on their forehead or lips can also be very soothing and help them relax, which can lessen physical discomfort and psychological distress. 

Sources

“NCI Dictionary of Cancer Terms: Opiate”. National Cancer Institute. https://www.cancer.gov/publications/dictionaries/cancer-terms/def/opiate 

“Gabapentin (Gralise, Neurontin) – Uses, Side Effects, and More”. WebMD. https://www.webmd.com/drugs/2/drug-14208-8217/gabapentin-oral/gabapentin-oral/details 

“Pregabalin (Lyrica) – Uses, Side Effects, and More”. WebMD. https://www.webmd.com/drugs/2/drug-93965/lyrica-oral/details 

“Bisphosphonates: Mechanism of Action and Role in Clinical Practice”. Mayo Clinic Proceedings.  https://pmc.ncbi.nlm.nih.gov/articles/PMC2667901/ 

“Pain, Pain, Go Away”. Psychiatry (Edgmont). https://pmc.ncbi.nlm.nih.gov/articles/PMC2729622/ 

“Ativan vs. Xanax: What are the differences?” Medical News Today. https://www.medicalnewstoday.com/articles/325771 

One of the most difficult and frustrating things about caring for someone who can’t communicate is assessing their level of physical comfort. Although nonverbal clues are not always accurate, they may be all you have to go on in determining your loved one’s pain-control needs. According to a study published in the Journal of Palliative Medicine, signs that your loved one may be in pain include the following:

• Facial expressions, such as frowning, a wrinkled forehead, tightly closed eyes, grimacing, rapid blinking or a sad or frightened look

• Vocalizations such as sighing, moaning, groaning, calling out or calling for help
• Body posture and movements, such as rigid, tense muscles, guarding (not moving or physically protecting a particular body part), restlessness, rocking or decreased mobility
• Changes in interactions with others, such as withdrawal, aggression, resistance to care, combativeness or refusal to move 

Notably, blood pressure, heart rate and respirations were not reliable indicators that patients were in pain. 

If you believe your loved one is in pain, but they are unable to speak to you, you may be able to get them to communicate through nonverbal clues. If they are conscious or semiconscious, you can ask them simple yes-or-no questions and instruct them to blink their eyes or squeeze your hand to indicate a positive response. This approach may take some time, but it can be effective. First ask them if they are in pain (“Is something hurting you?”). Then try to pinpoint the problem by narrowing it down by body parts. (“Does your stomach hurt? Your head? Your back?” etc.) If you can discern what’s hurting, that information can be an important clue as to what you can do to help. Abdominal pain, for example, is often a sign that the person is constipated. In that case, giving them more opiates can actually make the situation worse. They may just need a laxative or an enema to relieve the discomfort they feel. 

If you can’t determine whether or why your loved one is hurting, it’s better to err on the side of caution and assume they are in pain. If they have an order for medicine for breakthrough pain, try giving them a dose and assessing their demeanor afterward. You can also try repositioning them, playing some soft music, dimming the lights and speaking to them in a soft, comforting voice. Physical pain is very often only part of the reason for a dying person’s distress. Helping your loved one to feel emotionally supported can be as effective as giving an extra dose of a painkilling drug. 

Sources 

“Assessing Pain in Nonresponsive Hospice Patients: Development and Preliminary Testing of the Multidimensional Objective Pain Assessment Tool (MOPAT)”. Journal of Palliative Medicine. https://pmc.ncbi.nlm.nih.gov/articles/PMC3114254/ 

“Breakthrough pain: definition, prevalence and characteristics”. PubMed. https://pubmed.ncbi.nlm.nih.gov/1697056/ 

Although pain is a relatively common symptom for those with advanced stages of terminal illness, dying is not always painful. As a matter of fact, the moment of death may prove to be a more positive experience than most people imagine. 

For example, in a study published in Science Direct, researchers examined what occurred in the brains of dying rats and found a threefold increase in levels of serotonin, a neurotransmitter that elevates mood. The researchers surmised that this surge of serotonin might help to ease fear or anxiety associated with the actual moment of death. 

Near-death experiences may also give us clues as to what happens in the brain as we die. While not predictive, they can provide insight into what might occur since those who live to tell about it were once considered clinically dead. Although no clear explanation exists to explain these phenomena, they rather consistently suggest that the moment of death is a transcendent and quite pleasant experience. 

All this notwithstanding, many people who are in the final stages of a life-limiting illness suffer moderate to severe pain. Pain may occur due to the disease process itself, or it may be related to other factors such as immobility and associated musculoskeletal pain. Psychosocial factors also influence the experience of suffering. Anxiety, fear, social isolation and preparatory grief may cause significant distress and exacerbate physical pain. 

Managing Pain in the Dying 

Pain is a subjective experience, and each person will respond to the physical, emotional and spiritual challenges of dying differently. But if pain is an ongoing symptom, appropriate pain management is crucial to ensuring that the dying person and their loved ones do not suffer unnecessarily. The best way to accomplish this is to enroll the dying person in hospice as soon as possible. Hospice providers are uniquely skilled in the assessment and treatment of pain at the end of life, and can assist the patient and their caregivers in finding the best pain management tools for their end of life experience.  

Sources 

“Elevation of brain serotonin during dying.” Science Direct. https://www.sciencedirect.com/science/article/abs/pii/S0304394011005234 

“Providing care and comfort at the end of life.” National Institute on Aging. https://www.nia.nih.gov/health/end-life/providing-care-and-comfort-end-life