Death & Dying
Basic Information

Death & Dying

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 ...

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What affairs that I should have in place to prepare for my own death?

  • A will is a legal document that allows you specify how your property and assets should be divided and how custody of your children (if applicable) should be handled upon your death.
  • A health care directive (also known as a living will or advanced health care directive) is a document that enables you to legally record your wishes concerning whether 'heroic' or extended medical care measures should be taken to prolong your life should you become incapacitated and unable to speak on your own behalf.
  • Within the health care directive, or as an attachment document, you can name a trusted family member or friend as a "health care proxy", which gives them the power to make health care decisions on your behalf if you become incapacitated.
  • A conservatorship (or guardianship) is a complicated court arrangement that gives an individual legal power over the financial affairs of another person. This is pursued only when an individual is judged (by a court) to be no longer capable of managing his or her own affairs (for example, someone in a coma or in the advanced stage of Alzheimer's disease).
  • A durable power of attorney for finance gives another person the legal authority to act on your behalf with specific regard to managing finances. A person does not have to be declared incompetent in the court system to use a durable power of attorney document.
  • Beneficiary Information - It is important to make sure that beneficiaries are appropriately and currently named on all important financial assets you may have, including retirement accounts (such as pensions and 401k accounts), life insurance plans and other assets.
  • Medicare and Social Security - Adults approaching retirement age (generally 65-68 years of age depending on the year of birth) should file for Medicare and social security benefits.
  • Supplemental Insurance - Unfortunately, Medicare does not cover numerous medical services and expenses, so you may consider purchasing a long-term care insurance policy, and/or a supplemental medical insurance policy.
  • Trusts - A trust is a legal device into which a person's assets can be contributed. In this case, those assets are then no longer the property of the individual (called the grantor, donor, or settlor), but instead now belong to the trust.

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What is involved in making advance funeral arrangements?

  • While this might seem like a morbid task to some, such planning can spare your family from having to make difficult choices at a point in the future when they are also dealing with the pain and grief of your death.
  • Advance planning is also a way to spread out the cost and therefore reduce the financial burden that a funeral and burial can place on surviving family members.
  • Advance planning tasks can include buying burial plots or space in a mausoleum, making plans about the type of service that is to be held, and discussions with family about your desires.
  • While you can choose to prepay all expenses to a specific funeral home, financial advisors and other experts do not generally recommend this practice, as there is considerable risk in doing so.
  • Another option is to set up a fund for funeral and burial expenses, which is accessible by a beneficiary at the time of death. This can take the form of a trust fund, a life insurance policy that is equal to the amount that will be needed, or a savings/certificate of deposit account.
  • Discussing your wishes can be difficult or uncomfortable, as family members will often not want to think about and discuss your death, but it is particularly important to have this discussion if you have strong beliefs about the type of funeral or burial that you prefer.

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What are the stages someone may go through in accepting their own imminent death?

  • Research suggests that when considering our own death, we are most concerned about potential pain, helplessness, dependency, and the well-being of our loved ones.
  • Other common concerns include fear of a painful or unpleasant afterlife, fear of the unknown, and fear of a loss of dignity or individuality.
  • Probably the most famous model of the stages of grieving our own impending death was presented by Dr. Elizabeth Kubler-Ross in her book "On Death and Dying."
  • Not everyone will experience all of these stages, or, if all are experienced, they won't necessarily occur in this particular order.
  • Denial - In this stage, you may feel unable or unwilling to accept that the loss of your life will shortly take place and it can feel as though you are experiencing a bad dream and you are waiting to "wake up," expecting that things will be normal and that your diagnosis is a mistake.
  • Anger - you may begin to feel Anger at the unfairness of it and may become angry at yourself for the disease and at your higher power for allowing it to happen. Feelings of abandonment may also occur and religious beliefs may be severely tested during this stage.
  • Bargaining - this stage usually involves promises of better behavior or significant life change, which will be made in exchange for the reversal of the diagnosis.
  • Depression - During this period, you may cry, experience sleep or eating changes, or withdraw from other relationships and activities while you process the impending death. You may also blame yourself for having caused or in some way contributed to the diagnosis, whether or not this is justified.
  • Acceptance - you have processed your initial grief emotions, are able to accept that the death will occur and cannot be stopped. At this point, you are able to plan for your impending death and re-engage in daily life.

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What are some preparations and activities you can complete prior to your own imminent death?

  • Journaling/Life Review - you may want to begin a life review or journaling process in order to get your thoughts out on paper or to share your history with family for future generations.
  • Making Amends - you may also wish to repair broken relationships or resolve previous conflicts. This process may include contacting people that you may have hurt in some way, whether by words or actions.
  • Saying Goodbyes - it is also a time to say goodbye to family members and friends, which can be done verbally or by writing special letters to be opened after your death has occurred.
  • Keeping Active - dying is also a time to continue daily activities (as much as possible) and live each day to the fullest, rather than becoming withdrawn and isolated. You may have a list of things that you wish to do before death occurs, including traveling to special places, spending time with family and friends, reading, etc.
  • It is also important for you to remember that during this time it's okay (and quite normal) for you to want to:
    • Be assertive in communicating with health care providers and family/friends
    • Ask for more pain medication (or other medicines that keep you comfortable)
    • Watch television (even if it's "trashy" tv)
    • Ask for a particular food or drink (even if it's unhealthy or unusual)
    • Take a nap
    • Laugh or be silly
    • Cry
    • Be afraid
    • Scream/Shout
    • Do nothing for a while
    • Do what feels right to you, even if it doesn't make sense to others

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What should I know if I'm providing care for someone that is dying?

  • Providing care for a dying person can be a very difficult and emotional, and yet also rewarding experience.
  • 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 patient 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.
  • You need to ask for help from other family members when needed and/or allow others to help you when they offer.
  • It is important to communicate with the dying person about their condition and allow the person to have a say in how they are cared for whenever possible.
  • You'll need to work closely with the other health care professionals and caregivers involved in the process in order to help coordinate the flow of information.
  • You can also help the dying person to finish any incomplete business he or she may have, including legal or financial matters, making amends, coordinating specific visitors, or even facilitating travel to special places.

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What types of care are available to those that are dying?

  • There are two types of care available to those that are dying - palliative and hospice.
  • Palliative care is a form of medical treatment focused on reducing the severity or progression of disease symptoms and is typically provided by a team of medical professionals at a medical facility, such as a hospital or nursing home.
  • The goals involve 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 6 months of life as determined by a doctor's diagnosis.
  • This care is typically provided by medical doctors, nurses, social workers, psychologists, nursing assistants, trained volunteers, and spiritual advisors.
  • 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.

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What are the stages of impending death?

  • Even though you cannot stop the dying process, you can help the person be as comfortable as possible.
  • As the body systems slow down, the dying person will experience a decrease in appetite, thirst, and ability to swallow.
  • You may notice irregular breathing patterns where the pattern is shallow breaths followed by a long and deep breath, or periods of panting followed by no breaths at all.
  • Circulation of blood flowing out to extremities decreases and the dying person may complain of numbness in his or her legs and feet or may appear blue, purple, or mottled, and feel cooler to the touch.
  • A dying person may become restless, agitated (jerking, twitching, pulling at bed linens or clothing), disoriented, or confused (unsure about the time and place, or identity of people).
  • Any new pain or changes in pain levels should be reported to the health care team immediately.
  • Incontinence (losing control of bowel or bladder function) is not uncommon as death nears.
  • The dying person will typically start to withdraw and decrease his or her interactions with friends and family, and at the same time, the person will usually spend more time sleeping.
  • Towards the very end, the dying person will show a decrease in consciousness and responsiveness and you will have great difficulty rousing the person and they will stop speaking and responding to questions.
  • Research suggests that hearing is the last sense to go; so continue to talk to the person even if they are not speaking.
  • Comforting loving words, reminiscing, and giving the person permission to die are all appropriate.
  • Continuing to touch the person can also communicate love and comfort throughout the final stage.
  • Eventually, a coma state (in which you are unable to arouse the person at all) occurs minutes or hours before death and the final breath.

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What things need to be taken care of after someone has died?

  • In case of a sudden death where a cause is not immediately known, or if there is suspicion that the cause might have been unnatural, the medical examiner has the ability to require an autopsy.
  • When a person has died from natural and known causes, an autopsy is generally not required in the United States.
  • Elective autopsies are performed when the deceased has given permission to donate organs or serve as a volunteer for medical research.
  • Once a death has occurred, there are numerous people that must be notified including:
    • A Minister/spiritual advisor in order to begin planning a funeral and burial.
    • If the deceased was still working, the employer must be notified and will usually help handle benefit issues, such as health and life insurance.
    • Health and Life Insurance agents will help begin the process of terminating the policies and arrange for payouts to beneficiaries.
    • If the person used legal counsel to set up a will, the attorney will begin the legal steps necessary to process the person's will and estate.
    • The Executor of the Estate (the person designated to carry out the wishes of the deceased) will assist the attorney in following the will and getting assets to beneficiaries.
    • The Social Security Office and Internal Revenue Service will terminate benefits, such as Medicare and Social Security, and process taxes on the person's estate for the year in which the person died.
    • The executor will make arrangements to pay back any loans and/or close out accounts with all relevant banks and mortgage companies. Remaining assets will be distributed per the person's will.

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Basic Information
Introduction to Death & DyingPlanning for & Dealing with Your Own Imminent DeathSigns of Approaching Death & Types of CareDealing with a Loved One's Imminent DeathAfter a DeathGrief & Bereavement IssuesDeath & Dying Special Issues and ResourcesMore InformationLatest NewsLinks
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