As Death Approaches

Palliative Care Services

“Dying is not primarily a medical condition, but a personally experienced, lived condition.” William Bartholme, M.D. 1997, Kansas City. Died of Cancer of the esophagus, 2001

This booklet is intended to be a support for you when end of life

is being experienced by either you or a loved one.

Please remember that you are not alone and there are many experienced people to support you.

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Palliative Care

Palliative care is an approach that improves the quality of life of patients and their families facing the problems associated with life-limiting illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.

Spiritual Care and Health

“Spirituality is a dynamic and intrinsic aspect of humanity through which persons seek ultimate meaning, purpose and transcendence, and experience relationship to self, family, others, community, society, nature, and the significant or sacred. Spirituality is expressed through beliefs, values, traditions and practices.”2

Each person’s experience of living as they die is unique. Each person’s experience of being a companion to someone as they get closer to dying is also a personal individual experience. One important part of offering support can be caring for that person’s spirit. The spirit of a person is the part of them that is present while they are alive, and is absent once their physical body dies. Spiritual care involves being available and listening to what matters most.

To support your loved one’s spiritual needs, listen both with your ears and with your intuition. Often, people who are approaching the end of their lives experience a sense of what matters most to them. Sometimes they have questions and worries. Sometimes they are aware of things outside of what we can see and touch. This can be true of people whether they consider themselves spiritual or religious or not.

Someone who is getting closer to dying may reach out or talk to people in the room that you cannot see. If the unseen people are not kind or the person who is dying does not feel safe, you can ask the unseen people to leave. Please mention this to your medical team. It happens often and can be something the medical team needs to know.

A person’s openness to spirituality may include a desire to explore their relationship with the Divine (however they might name the Divine). Depending on your loved one’s previous experiences, they might appreciate a ritual of blessing. For some people this is a specific religious service provided by their faith community. Even if you have not been in touch with a local faith community in a long time, you are welcome to contact the community of your choice to offer your support in this. Your local hospital information desk may have contact information for local Spiritual Care providers.

Spiritual Care is an important part of whole person wellness. When a person’s physical body cannot be healed, Spiritual Care can help support people emotionally and spiritually as they ask their questions and look for hope and meaning.

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What Causes Death to Occur?

In progressive illness, deterioration in the last few hours and days is usually a total body process. Even when the illness relates mainly to a specific organ or body system, it affects the entire body, and all of the body systems weaken. Changes in breathing, skin discoloration and temperature are evidence the brain becomes less able to function.

Death eventually occurs when the heart stops, because it cannot beat when the other vital systems are ill. Efforts to restart someone’s heart with CPR (cardiopulmonary resuscitation) rarely work in such situations. The heart cannot be restarted when the reasons why it stopped remain unfixable.

During the natural dying process, your loved one or friend will experience a series of changes in mental, emotional and physical conditions. These symptoms occur differently with every individual, in no particular order, and at times may overlap. Physically, the body undergoes a process of shutting down, while emotional processes may include a desire to take care of unfinished business.

The following is a guide for some of the physical and emotional changes commonly seen during the dying process.

Fatigue & Sleep

Profound fatigue is often seen in those who are dying. They may sleep for longer periods and sometimes be difficult to wake. They may also want to see fewer people or perhaps be alone. Be aware that the person’s energy is limited. Plan conversations and activities for times when they are more awake and alert. Consider keeping visiting times brief.

Confusion & Disorientation

Confusion is very distressing to the patient as well as those who care for them.

If confusion comes on abruptly, it is best to talk to your nurse, as it may be a sign of treatable issues such as infections, electrolyte imbalances or side effects of medications. Treatable causes must be explored, but often when people are close to death, no treatable causes exist.

At end of life, confusion may happen when the person’s brain can no longer function properly due to illness. It may start days to weeks before a person’s death. The dying person may have problems understanding because thinking, reasoning, speaking and memory are affected. They may become paranoid or act out of character. Sleep patterns can become disrupted and the person may report hallucinations and bad dreams. They may become restless and pull at bed linen and clothing. They may even be unable to recognize familiar people or surroundings.

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To Provide Comfort

Introduce yourself before you speak and reassure your loved one that you are there.

Speak softly, calmly and naturally.

Remind them of time, place and who is in the room.

Reassure them they are safe.

Create a calm and comforting atmosphere; dim lights, holding a hand, stroking arms or forehead, reading aloud, or playing soft, soothing music.

If the restlessness persists, call your nurse. Do not try to restrain your loved one from moving.

Physical Changes Before Death

There are several physical changes that happen when a person is nearing death. They happen because the brain can no longer manage body functions. These changes become part of the normal dying process and cannot be reversed. If one attempts to stop these changes, (i.e. by giving IV fluids) it makes the dying process more difficult for the person.

Circulation and Skin

Body temperature, fever and skin colour changes.

When the body is starting to die, the parts of the brain which control body temperature and skin circulation may not always function properly. A patient may have a normal temperature, yet there may be coolness in the face, hands and feet. Others may develop fever, without any source of infection. The skin may seem pale, blotchy or even discolored (mottling). These are all normal changes and not necessarily related to low oxygen levels. Often, these changes will come and go. They are not distressing to the patient near end-of-life.

Sometimes, if there are lung or heart problems, the oxygen levels in the blood may fall. The skin of the face may develop a bluish or purplish colour. The heart may beat more quickly, but not as strongly. This may make the pulse hard to feel at times. Again, this is a normal part of the dying process. If your loved one seems restless, call your nurse.

What you can do:

Keep your loved one lightly covered; if your loved one says they are cold, offer another cover.

Avoid using an electric blanket since the temperature may fluctuate frequently.

Socks may help keep cold feet warm.

For fever, use a cool, damp washcloth on the forehead, wrists or under each arm. Call your nurse to discuss other comfort measures that might help your loved one. If the color changes are distressing to caregivers, turning down the lights in the room can make the colour change less obvious.

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Unresponsiveness

Your loved one may not respond to voices or touch or may look like they are sleeping with the eyes open. It is believed that patients can still hear when they are in this state. Everything you say may be heard. Speak in a calm natural way.

Loss of Appetite and Thirst

When a body is preparing for death, hunger and thirst are experienced differently than in someone who is healthy. It is natural to have a decreased appetite or to desire only certain foods or beverages. Your loved one may say that food no longer tastes good; they may lose interest in eating altogether. Meats and heavy proteins are often the first food group to lose appeal, followed by fruits and vegetables. During this phase, a person’s diet may be reduced to soft foods and liquids. It is okay for your loved one to not eat. Sometimes eating will increase discomfort.

Swallowing

Difficulty swallowing or forgetting to swallow is common. Remind the person to swallow.

If they can’t swallow, forcing to eat or drink may cause vomiting or choking.

Discuss with your doctor or nurse when to stop offering food and/or fluids.

What you can do:

Don’t force your loved one to eat or drink.

Keep the lips moist with a damp cloth, sponge, or frequent sips of water. Sponge swabs soaked in water or a favorite beverage may be used.

Offer small frequent snacks of the types of foods they prefer.

Pain

A person’s perception of pain may change during the course of the illness. It may increase, decrease, be stable or there may be no pain at all. Watch for complaints or signs of pain, but do not change medication without the direction of your medical care provider. Nonverbal signs of pain can include frowning, grimacing, moaning, restlessness, and increased perspiration.

Call your nurse for help with complaints about pain.

Irregular Pulse or Heartbeat

An irregular pulse or heartbeat is common. The pulse may become weaker as well.

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Bladder or Bowel Control

There may be loss of bladder or bowel control. Though it can be troubling, it is common for dying people to lose control of either bladder or bowel or both.

Breathing changes

Changes in breathing are generally the most recognizable physical signs that death may come soon. Breathing changes do not mean that the person is uncomfortable. To assess comfort, look at facial expression and overall calmness, rather than the breathing rate or oxygen levels.

We generally see changes in 1) how fast the breathing is; 2) how deep the breaths are; 3) how regular the breathing is; 4) the kinds of muscles used in breathing.

Normal breathing is regular and either shallow or deep depending on activities or conscious wishes. When individuals become weak at end of life, it is common for breathing to become more shallow, rapid or irregular. Sometimes breathing may become slow and shallow and at times hardly noticeable. When end of life is closer, there may be periods of time when the breathing stops and restarts. This does not mean there is distress.

Sometimes the muscles at the front of the neck are used for breathing. The shoulders may also lift up when the person is breathing in. This might seem as though the person is struggling. If there is no sign of agitation or discomfort, this is simply the body automatically using extra muscles to help in breathing to compensate for general weakness. If the person’s face appears calm and peaceful it is likely that they are not distressed.

Reflexive breathing movements

There may be very slight motions of breathing happening irregularly for a few minutes after the final breath. These are reflex actions and are not signs of distress.

There may be secretions of the lungs, or a saliva collection at the back of the throat (which cannot be swallowed because of weak muscles) which may cause a gurgling sound. This is sometimes referred to as the “death rattle”, and is likely not distressing to the unconscious dying person. However, it can be upsetting for people at the bedside. Usually, these secretions are too deep down the throat to be suctioned out. Medications can be given under the skin, (sometimes by a patch or a gel) to slow or stop the production of the secretions.

If your loved one develops gurgling or rattling in the chest and throat, it may be comforting to elevate your loved one’s head with a pillow or blanket; turn on side; or turn head to one side. This may help clear the fluid. Reassure that all is okay, hold your loved one’s hands and speak gently. Mouth care may be given as instructed by your nurse.

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The Unexpected Rally / Sudden Rally or Surge in Energy

Sometimes a person can become energized and alert when they were previously confused or listless. Your loved one may experience a sudden increase in appetite when previously appetite was all but gone. A person may decide to see visitors when before they wished to be left alone. These are all normal experiences.

Such unexpected and puzzling fluctuations in alertness can be exhausting for family members, who have been preparing themselves for the death of their loved one. They may doubt the credibility of health care professionals who have been indicating that death may be soon. Usually a specific cause for these brief rallies cannot be determined.

What you can do:

Give your loved one all the attention you can

Be fully present.

This sudden burst of energy may not last long and may not happen again. Help your loved one create a quality experience during this time of awareness and presence, however long it may last.

Nearing the End / Giving Permission to Go

One of the most difficult things for many family and friends is allowing a person to let go and accept the transition into death. If the dying person believes that those around him are hanging on, he will sometimes do the same to show concern for loved ones.

What you can do: Reassure your loved one and let him know it is all right to let go. Death is a natural part of life.

Say goodbye; give or receive forgiveness or whatever feels appropriate. You may want to recount favorite memories, hold hands or share your love and appreciation for your loved one and for all that life has offered. Your loved one may wish to know if his life has made a difference in your life or the lives of others. Assure your loved one they will be remembered.

How do I know when death has occurred?

At the time of death: there will be no pulse.

there will be no breathing.

eyes may be closed or open and fixed in.one position.

The most obvious sign that death has occurred is that breathing has stopped. There is not even any slight breathing motion. The muscles of the face will have relaxed, and there will be no movement anywhere. Sometimes, shortly after death there is minor muscle twitching. However these go away in a few minutes.

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The pulse in the neck that is sometimes visible will have stopped, and a pulse cannot be felt at the wrist or elsewhere. There will be no heartbeat.

The eyelids may not close all of the way, but stay half-closed. This is often the natural resting position. The pupils (the black circle of the eyeball) become quite large and do not change in size in response to light.

The person’s body will become cool to the touch, which may take a few hours.

Family and friends may wish to stay by the bedside after the person has died and say whatever words seem appropriate and meaningful to them. There is no harm in touching the person’s body, and there should be no rush to move the person until everyone has had a chance to say their final good-byes.

Who to call when your loved one dies:

Do NOT call 9-1-1, police, or ambulance. This would mean immediate resuscitation attempts and transfer to a hospital, regardless of your wishes

Do call your home care nurse or family doctor to the home to pronounce death.

Do call family members, friends, or spiritual advisor if you would like someone to be with you.

Do call the funeral home after the doctor/home care nurse has pronounced death and after family members who wish to say good bye have done so.

Do not rush. Take time to say your goodbyes. Feel free to stay with the person’s body as long as you wish.

Support & Information for You

Please remember, you are not alone in your role as caregiver. You always have help to answer your questions and concerns or to handle challenging situations. Our Palliative Care Team is here to help care for your loved one and to support you during this time. Managing medication to alleviate symptoms of discomfort such as pain, nausea, agitation or labored breathing is our medical area of expertise. Our team also addresses psychosocial issues. Our goal is to help you and your loved one be as comfortable as possible. Our team may discuss bereavement services with you and your family. If services are desired, consent for bereavement follow up for next of kin of palliative patients may be completed.

If you are planning to have your loved one die at home, talk to your family doctor and palliative care team.

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If you can, make the funeral plans with your loved one and with other family members. Planning in advance can ensure that the person’s wishes are known and respected and reduces the number of decisions needed at the end of life.

Arrangements after Death:

Take unused medications to your pharmacist for disposal.

Discuss with your home care nurse the process for return of supplies and equipment.

You matter to the last moment of your life, and we will do all we can, not only to help you die peacefully, but to live until

you die.

Dame Cicely Saunders

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Resources:

1. Virtual Hospice Canada: http://virtualhospice.ca

2. Hospice Foundation of America: https://hospicefoundation.org/hfa/media/Files/Hospice_TheDyingProcess_Docutech-READERSPREADS.pdf

3. Canadian Hospice Association: A Caregiver’s Guide – A Handbook about End of Life Care

http://hospicetoronto.ca/PDF/Hand_book_about_End_of_Life_Care_CHPCA.pdf

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References:

1. Spirituality contribution - Rev. Jennifer Holtslander, Chaplain, Veteran’s Program WRC

2. Much of this document had been adapted from Virtual Hospice Canada. http://virtualhospice.ca

3. https://hospicefoundation.org/hfa/media/Files/Hospice_TheDyingProcess_Docutech-READERSPREADS.pdf

4. http://hospicetoronto.ca/PDF/Hand_book_about_End_of_Life_Care_CHPCA.pdf

5. Unknown. Palliative care [Photograph]. [Unknown]: Prachatai; 2016 Sept 22; [cited 2020 Feb 6]. Available from: https://www.flickr.com/photos/prachatai/with/48917684353/

6. British Columbia Government. Stallat’en First Nation elder Ward shares his knowledge with

UNBC students [Photograph]. [Prince George, BC]: BCGovPhotos; 2016 Sep 6; [cited 2020

Feb 5]. Available from: https://www.flickr.com/photos/bcgovphotos/28882170544

7. Unknown. Hospice caring elderly old [Photograph]. [Unknown]: Truth Seeker; 2016 Oct 15;

[cited 2020 Feb 6]. Available from: https://pixabay.com/users/truthseeker08-2411480/

CEAC 1408 June 2020

Regina Area