Death and Dying Introduction

Whether we acknowledge it or not, most of us fear death. Death remains a great mystery, one of the central issues with which religion and philosophy and science have wrestled since the beginning of human history. Even though dying is a natural part of existence, American culture is unique in the extent to which death is viewed as a taboo topic. Rather than having open discussions, we tend to view death as a feared enemy that can and should be defeated by modern medicine and machines. Our language reflects this battle mentality, we say that people "combat" illnesses, or (in contrast) "fall victim" to them after a "long struggle." Euphemistic language also gives us distance from our discomfort with death. People who die are "no longer with us", have "passed", gone "to meet their Maker", “bought the farm”, “kicked the bucket", and so on.

Some of the discomfort with the death and dying process has come about because death has been removed from common experience. Typically, we no longer die at home surrounded by family and friends, but in hospitals and other health care facilities. Out of the approximately 6,500 people who die in the U.S. every day, only 1200 die at home. This lack of personal experience with death and dying only adds to our sense of trepidation and fear.

It is human nature to try to avoid things we fear. Because we are afraid, we tend to avoid thinking about our own mortality. It is time to adjust our thinking. We live in a unique era. Thanks to medical advances in defeating sudden causes of death such as heart attacks and strokes, more of us are dying of so-called "incremental" (slower moving) illnesses such as cardiovascular disease, cancer, respiratory illnesses, and diabetes. As a result, many have been given the gift of time and the ability to shape their death and dying process. Many of us now have the luxury of expressing and recording medical care and financial wishes in advance. In addition, we can address interpersonal (e.g., saying goodbye, forgiving old hurts) and spiritual issues (e.g., finding meaning in life) before we die.

The following paper is designed to provide you with information about how to help someone you care for is dying. We also discuss grieving and some pointers for those that are left behind to continue living. We hope that this information can take away some of the anxiety caused by the unknown, and allow you to find a way to die a good death, or help someone you love have the same experience.

Caring for a Dying Person

Providing care for a dying person can be a very difficult and emotional, and yet also rewarding experience. There are many challenges that you are likely to face as you work to make the dying person comfortable.

One of the most important things to remember is that you need to take care of yourself in addition to caring for the dying person. This will be a stressful and trying time and if you aren't able to take care of yourself (getting yourself enough rest, food, etc), you won't be able to provide quality care to your client either. You need to monitor your own emotions and seek outside or professional help if necessary, should you find yourself overcome by anxiety, fear, guilt, anger, depression, or other powerful feelings that may threaten to temporarily overwhelm you. This also includes asking for help from other family members when this is needed and/or allowing others to help you when they offer. If you try to do everything on your own, you will quickly burn-out and not be able to provide good care.

It is important to continue to communicate with the dying person about their condition as much as possible. Allowing the person to have a say in how they are cared for whenever possible is an important gift you can provide them. Doing so helps the dying person to maintain a sense of independence and dignity, particularly in the face of their ultimate loss of control over a medical disease or condition that will end their lives. In addition to providing good physical care, it is also good to encourage the dying person to share his or her feelings, not only about physical symptoms, but also about emotional and spiritual concerns. Let the dying person know you are available and there to support him or her.

You'll need to work closely with the other health care professionals and caregivers involved in the care giving process (such as other family members, doctors, nurses, aides, and spiritual advisors) in order to help coordinate the flow of information to all concerned parties. This communications task can include monitoring the dying person's level of physical comfort and emotional health, and letting others know when they may want to become more involved. Partnering with other caregivers helps you to become more educated about what to expect over the course of a disease and during the final days. Asking lots of questions can help reduce some of the stress, anxiety and fear that you may be feeling about managing in the final days.

Symptoms of Grief

Though each person grieves in unique ways, there are common behavioral, emotional, and physical signs and symptoms that people who are grieving typically experience.

Physically, persons affected by grief may experience:

• Fatigue and exhaustion alternating with periods of high alertness and energy

• Temporary hearing loss or vision impairment (possibly associated with dissociation, see below)

• Difficulty sleeping

• Disturbed appetite (either increased and decreased)

• Muscle tremors

• Chills and/or sweating

• Difficulty breathing or rapid respiration

• Increased heart rate or blood pressure

• Stomach and/or intestinal problems

• Nausea and/or dizziness

Mentally, persons affected by grief may experience:

• Confusion (memory, concentration, judgment and comprehension difficulties)

• Intrusion (unwanted thoughts, arousal, nightmares)

• Dissociation (intense feelings of detachment, unreality and denial)

Emotionally, persons affected by grief may experience:

• Shock

• Fear, anxiety or apprehension

• Anger, irritability or agitation

• Guilt

• Numbness, remoteness, depression

Unexpected Death Vs. Expected Death

Different emotions are triggered when we know that death is imminent versus when it comes "out of the blue." Knowing ahead of time that a person is dying allows us to prepare, both by planning ways to minimize the negative impact of the loss after it occurs, as well as saying goodbye. An unexpected death can be much harder to deal with than an expected one. Because survivors haven't said goodbye or resolved lingering relationship issues, feelings of guilt and anger can linger for many years and prevent closure. The perceived "fairness" of the loss is also important. Losses that challenge our view of the world as a predictable and fair place are harder to manage. For example, it is easier to accept the loss of an aged parent who has lived a full life than it is to accept the loss of a young child. Death from a chronic disease tends to be easier to accept than death by a random, senseless accident or sudden medical crisis that comes out of the blue. Dealing with the suicide of a loved one typically brings about feelings of anger, as well as guilt and regret for not recognizing signs of depression, hopelessness, or other warning signs of suicidal behavior.

There are many ways that people can handle their grief, anger and other emotions. Please read our article on Grief and Bereavement Issues for an extensive discussion on how people can work through the stages and emotions of grief in healthy and productive ways. This article also discusses ways to recognize when grief is becoming pathological and when grief is beginning to come to an end.

Types of Care Available to Those Who Are Dying

There are two types of care available to those that are dying - palliative and hospice. Even though the terms are sometimes used interchangeably, there is a distinction between the two.

Palliative care is a form of medical treatment focused on reducing the severity of disease symptoms (such as pain) or slowing the disease's progress, rather than providing a cure. This type of care is typically provided by a team of medical professionals at a medical facility, such as a hospital or nursing home. The goals include making the person as comfortable as possible and addressing quality of life needs (in physical, psychological, and spiritual realms) in the time remaining. Palliative care can be delivered at any point during an illness and for an extended period of time as necessary.

Hospice care in the United States is a specific form of palliative care limited to the last six months of life (determined by a doctor's diagnosis). Hospice care is offered 24 hours a day, and can be provided at an individual's home, a hospice care facility, or a hospital/nursing home. The focus of hospice care is to provide pain management and medical care, emotional support, and spiritual counseling for the dying patient, and similar emotional and spiritual help and support for family members. Counseling about death, dying, and the grief process; facilitation of making amends and closure; respite care for family caregivers; and bereavement groups and support are some of the services typically provided by hospice. Hospice teams typically include medical doctors, nurses, social workers, psychologists, nursing assistants, trained volunteers, and spiritual advisors.

Hospice care is sometimes covered by private medical insurance and sometimes not covered. However, Medicare will generally pay for hospice services once a doctor has determined that a person has less than six months to live. Out of pocket (not covered by insurance) hospice services generally cost several hundred dollars. Therefore, it is important to be aware of what your private insurance covers and doesn't cover, and plan ahead while still healthy for the possibility that you may one day require hospice services.

Unfortunately, some people do not receive hospice or palliative care before dying. Still others are referred when they are too sick to realize the full benefits of available hospice services. In some cases, a doctor is at fault; he or she may be reluctant to refer a patient because it can be difficult for health care providers to admit that there are no other options for curing a particular condition. Other times, as is sometimes the case with 'macho' men; patients and caregivers may view these types of care as giving up, a "cop-out", or "unmanly". Such attitudes are wrong-headed, of course.

Choosing hospice or palliative care is most decidedly not about "giving up". Instead, choosing palliative or hospice care is a practical, reasonable and very effective method of ensuring that your last days will be as good as they can be. While death may be inevitable, unbearable pain and extreme discomfort does not have to accompany the process. A person who has the foresight and strength to ask for support and care is not a "wimp," but instead a strong and intelligent person who wants to obtain the best care for himself or herself and family during the time he or she has remaining.

Signs and Symptoms of Approaching Death

While each dying person will experience the final stages of living in different ways depending on their illness or injury, there are a few common symptoms that often occur:

• Changes in Sleep Patterns and Energy Level. You will generally be awake less and your energy level will decrease.

• Breathing changes. You may experience periods of rapid breathing or even periods where your breathing stops for a few seconds before starting again

• Hallucinations. It is not uncommon for you to hear voices or see people that aren't there.

• Changes in Appetite. You will likely lose interest in food and eat much less than normal

• Emotional and Personality Changes. You may become withdrawn and depressed, talk less to others and become less interested in the world around you. Depending on your illness, you may even show personality changes. For example, dying people with Alzheimer's Disease (a form of dementia that causes people to slowly lose their memory and self-control), sometimes become angry, have outbursts, swear and yell.

Death and Dying Conclusion and Resources

Death is a inseparable part of life. If we are to live life honestly and without fear, we have to also accept that death is ultimately inevitable. Death should not cause us to live in fear, but rather to live our lives in the very best way that we can. It is important to not "bury our head in the sand" and instead, to make responsible preparations including financial and legal arrangements, as well as talking about our wishes with our family and friends. By understanding the rites and rituals that accompany a death in our culture, religion or spiritual group, we can better prepare for the dying and grieving process.

Additional Resources:

Books:

Dying Well. 1998. by Ira Byock, Riverhead Trade, 320 pages. The Needs of the Dying: A Guide For Bringing Hope, Comfort, and Love to Life's Final Chapter. 2007. by David Kessler, Harper Paperbacks, 256 pages. On Death and Dying (Reprint Edition). 1997 by Elisabeth Kubler-Ross, Scribner, 288 pages. How To Go On Living When Someone You Love Dies. 1991. by Therese A. Rando, Bantam, 352 pages. Final Gifts: Understanding the Special Awareness, Needs, and Communications of the Dying. 1997. by Maggie Callanan & Patricia Kelley, Bantam, 256 pages. How We Die: Reflections on Life's Final Chapter. 1995. by Sherwin B. Nuland, Vintage, 304 pages. Final Choices: Seeking the Good Death. 1998. by Michael Vitez, April Saul, & Ron Cortes, Camino Books, 72 pages. Peaceful Dying: The Step-By-Step Guide to Preserving Your Dignity, Your Choice, and Your Inner Peace at the End of Life. 1998. by Daniel R. Tobin & Karen Lindsey, Perseus Books Group, 206 pages.