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End of Life
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This site includes information on grieving, workshops and resources. Many articles focus on what you need to know about Hospice, such as What to Expect and Demand From a Good Hospice
The Americans for Better Care of the Dying site is dedicated to advocacy for better support and care systems for the seriously ill. It contains news updates, a resource directory and information on events. The "Reading Room" contains many articles on death and dying including an online version of the Handbook for Mortals.
The site is run by the Caregiver Media Group, founded in 1995, which also produces "Today's Caregiver Magazine" and "Sharing Wisdom Caregivers Conferences." The Web site contains back issues of the magazine, information on conferences, and a discussion forum.
This site provides medical and technical assistance, research and education for children with life-threatening conditions and their families.
Compassion in Dying Federation provides national leadership for client service, legal advocacy and public education to improve pain and symptom management, increase patient empowerment and self-determination and expand end-of-life choices to include aid-in-dying for mentally competent, terminally ill adults.
Elder Care Online offers information, education, and support for caregivers, safety advice, and links to additional caregiver resources on their website.
This is a comprehensive gateway to bereavement and grief-related resources on the Web, including a support community for people dealing with death, grief, and major loss including life-threatening and chronic illness.
Growth House is a San Francisco-based non-profit organization that offers a broad range of online information on end-of-life care: from hospice handbooks to sites that give tips on explaining death to children.
The Hospice Association of America (HAA) is a national organization representing more than 2,800 hospices and thousands of caregivers and volunteers who serve terminally ill patients and their families. The site offers general information about hospice, including consumer guides, and fact sheets.
Hospice Foundation of America exists to help those who cope personally or professionally with terminal illness, death, and those who process grief and bereavement. HFA provides leadership in the development and application of hospice and its philosophy of care with the goal of enhancing the American health care system and the role of hospice in it. HFA's website includes information about hospice care, grief and loss, pain management, and end of life decision making.
The site includes information on finding hospice services, as well as articles and guides for patients, care givers, and people suffering from grief. Their Hard Choices for Loving People article, written for those making medical decisions on behalf of loved ones, is of note.
The National Family Caregivers Association (NFCA) is a national non-profit organization that provides information and education for caregivers. The site offers tips, guides and newsletters.
The National Hospice and Palliative Care Organization (NHPCO) is the largest nonprofit membership organization representing hospice and palliative care programs and professionals in the United States. The organization is committed to improving end of life care and expanding access to hospice care. Information on the site includes advance care planning, managing pain, coping with grief and financial planning.
Caring Connections, a program of the National Hospice and Palliative Care Organization (NHPCO), is a national consumer and community engagement initiative to improve care at the end of life, supported by a grant from The Robert Wood Johnson Foundation.
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313

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Transcript: 
End of Life (transcript)

The end of life for all of us is inescapable, with the only questions being when and under what circumstances.  Yet dying is so terrifying to so many people that we avoid the subject.

Most of our efforts surrounding death are directed at trying to postpone it, and medical science has been fairly successful in doing so.  A century ago the average age of death was in the mid forties.  Today, we enjoy about 27 years of extra life. We've become so accustomed to medical advances prolonging life, that we're often surprised when, at last, there is nothing to be done.  As a result, we can be woefully unprepared to make end-of-life decisions.  

If we are to die on our own terms, we need to know what those terms are.  How far should doctors go with medical intervention?  You may not want to be kept alive or endure invasive procedures if there is no hope. But what if there is some hope?  What's your goal after treatment is over?  What quality of life is acceptable?  Will it vary depending on circumstances?  For example, the impending birth of a grandchild might give an edge to quantity over quality.  Where do you want to be when you die?  Under what circumstances might that change?
 
These are weighty issues and you may need help in coming to terms with them.  It's not easy in the best of circumstances and it's especially difficult if you're addressing them after having been diagnosed with a terminal disease.  It's normal to be sad, angry and afraid and it takes time to grapple with the overwhelming emotions.  Sometimes talking to a counselor, minister or physician can help.   

At some point, however, a frank discussion with loved ones is essential.  Every day in hospitals across America, countless families face difficult choices without knowing what their loved one would want.  They need to be prepared to make decisions for you when you cannot and simultaneously cope with their own fear, anxiety and grief.  To avoid confusion and minimize disagreements between your family or your family and physicians, it's best to write advance directives.  Advance directives, such as a Living Will, Durable Power of Attorney, a Do-Not-Resuscitate (DNR) Order and Health Care Proxy, are legal documents which allow you to formally convey your decisions about end-of-life care.

One of the hardest parts about dying can be the effect it has on your family. Open conversation about how you feel about death can help prepare both you and your loved ones to let go when the time comes.  Helping them deal with your death can also help you find peace and comfort.

Planning ahead is a gift you can give yourself and your loved ones.  The pain of separation and loss can never be made easy, but it can be made more bearable.  With candid communication you can find valuable opportunities to share loving feelings, to reconcile differences, and to discover meaning.


Quick Facts

  • Nearly 2.5 million Americans will die this year

  • Polls show 71 percent of Americans would prefer to die at home and 86 percent believe people who have a terminal illness would most like to receive end-of-life care at home. However:
    • 20 percent of Americans die in hospital intensive care units and 38 percent in hospitals
    • 20-to-25 percent of Americans die in nursing homes

  • Three quarters of Americans believe in having a legal document to spell out how they want to die if they are incapacitated, but less than 20 percent have a living will or medical power of attorney.

  • In a recent study:
    • Less than 50% of severely or terminally ill patients had an advance directive in their medical record
    • Only 12% of patients with advance directives had received input from their physicians in its development

  • Lack of communication with physicians and other health care providers causes confusion about medical treatments, conditions and prognosis, and choices that need to be made.

  • In 2005 1.2 million people with life-limiting illnesses received care from one of the more than 4000 hospice programs in the United States.

  • Nearly 80 percent of Americans don't realize hospice care is available at home. 90 percent of Americans are unaware that Medicare can cover hospice care costs.

Not fact, but theory.

  • Elisabeth Kubler-Ross developed a stage theory of death and dying built on extensive interviews with people who were dying and with those who cared for them:
    • Stage 1 – Denial.  Denial comes in several forms.  A patient may flatly reject the diagnosis, simply refusing to believe the news.  In other forms of denial, patients fluctuate between refusing to accept the news and, at other times, confiding that they know they are going to die.  Patients deal with loneliness, internal conflict, guilt and feelings of the meaningless of their lives.  
    • Stage 2 – Anger.  A dying person may be angry at everyone – people who are in good health, their spouses and other family members, those who are caring for them, their children.  They may lash out at others, and wonder – out loud – why they are dying and not someone else.
    • Stage 3:  Bargaining.  In the bargaining stage, dying people try to negotiate their way out of death.  In some ways, bargaining seems to have positive consequences.  Although death cannot be postponed indefinitely, having a goal of attending a particular event or living until a certain time may in fact delay death until then.  However, there is a gradual realization of the real consequences of their condition.  
    • Stage 4:  Depression.  Realizing that the issue is settled and they cannot bargain their way out of death, people are overwhelmed with a deep sense of loss.  They know that they are losing their loved ones and that their lives are coming to an end.  The depression they experience may be of two types.  In reactive depression, the feelings of sadness are based on events that have already occurred:  the loss of dignity that may accompany medical procedures, the end of a job, or the knowledge that one will never return home.  On the other hand, dying people also experience preparatory depression, feeling sadness over future losses.  They know that death will bring an end to their relationships with others, and that they will never see future generations.
    • Stage 5:  Acceptance.  In this last stage people are fully aware that they are dying.  Increasingly self-reliant, they have made peace with themselves. 

Ask Your Doctor

This list of questions is a good starting point for discussion with your doctor. However, it is not a comprehensive list.

Before you begin to ask questions of your doctor, there are questions you need to ask yourself:

  • How much value do I place on extending my life as opposed to the quality of my life?

  • What is most important to me when I consider my treatment options – living longer, minimizing pain, maximizing function?

  • How much pain and risk would I be willing to accept if my chances of recovery are good?

  • What conditions would make me decide not to use life-prolonging treatment?

  • Do financial considerations influence my medical care decisions?

Then ask you doctor:

  • Do you agree with my philosophy and goals?  If not, can you still support them?

  • What is my (my loved one's) prognosis? 
    • What are the best outcomes that I might reasonably hope for?
    • What is the shortest and longest time that I (my loved one) can expect to live?
    • How confident are you about this prognosis?

  • What should I expect as the illness worsens?

  • Will you be able to relieve pain, yet still allow me (my loved one) to be able to recognize and respond to family and friends?

  • What will you be able to do to make sure I (my loved one) won't have to endure overwhelming pain, shortness of breath, or other symptoms?

  • What do you expect of us?

  • What are the things to consider when choosing between aggressive treatment and comfort care?

  • How much experience have you had in providing palliative care?

  • How long can I still take care of myself?  

  • What should I consider when choosing where I (my loved one) will be cared for?
    • At home?
    • At a live-in hospice home?
    • At a hospital palliative care facility?

  • Will you minimize transitions between services, settings, and personnel?  When they are necessary, will you make sure they go smoothly?

  • Do you visit assisted living facilities, nursing homes, or hospitals to take care of patients?

  • How difficult is caring for a dying loved one at home?  What issues should the caregiver be prepared to face?

  • What physical and emotional palliative care options will be available and which do you think might be of help?

  • When caring for a loved one at home:
    • When should the caregiver call for professional help?
    • How can caregivers provide physical comfort?
    • How can caregivers provide emotional comfort?

  • What can I do instead of going to the hospital in an emergency?

  • How do I make it known that I don't want CPR in case of an emergency?

  • When should a decision about entering a hospice program be made?

  • Who can help me find and tap into needed services?

  • Will you support my family before, during, and after my death?

Key Point 1

Advances in medical technology have changed the way we live – and the way we die.  As we approach the end of our lives, many of us will need to make choices, some simple – some complex.  Knowing and understanding the options available can help us make decisions that are right for us.

Throughout most of our lives, aggressive curative medical treatment is the appropriate choice.   Medical procedures commonly extend our lives, even if we've been severely injured or have a serious disease such as heart disease or cancer.   Treatment can give us many extra years and a good quality of life and function. Sometimes, though, the procedures that extend life are marginal in their benefit and can even turn living into a burden. 

In the absence of a clear directive from a patient or if there is disagreement among family who are making decisions for a patient, the most aggressive path of care is usually followed.  However, there is a wide range of what is acceptable from legal, ethical, moral, and medical points of view.  At one end of the spectrum is the use of every possible technology to prolong life and at the other end (for most of the U.S.) the option to forego curative treatment and choose comfort care instead.  In Oregon, through their 1997 Death with Dignity Act, terminally-ill Oregonians are allowed to end their lives through the voluntary self-administration of lethal medications, expressly prescribed by a physician for that purpose.

Before any decision is made, however, you need to understand your own unique situation and its likely future course.  The more you and your family know, the better able everyone will be able to cope with what is happening.

It's your doctor's responsibility to guide you and answer the difficult questions (see Questions to Ask Your Doctor).  You'll want to talk about the probable outcomes of your illness and how it will cause your death.  You need to know your odds of recovery, regaining function and having an acceptable quality of life (as you define it).

As you talk to your doctor, know that the conversation is not easy for him or her.  Your doctor may be concerned about instilling false hope or destroying hope; about over- or under-estimating your remaining time; about finding the right balance of knowing when to keep aggressive and often painful treatment going and when to stop it.  If, after talking to your doctor, you still have doubts, seek a second opinion.  A second opinion not only assures you that a mistake has not been made, but it can offer another perspective that can add to everyone's understanding and peace of mind.

    

Key Point 2

A good death is possible whether we choose aggressive treatment or comfort care.  It is a team effort of patient, family and health care professionals and requires careful open communication.

The time at the end of life is different for each person. Each individual has unique needs for information and support and the medical professionals involved need to be aligned with your goals.  This includes frank discussions to help identify goals and how they might change as your condition progresses and to outline what will be needed for your care.  Your care team may include doctors, nurses, pain management specialists, hospice and home health liaisons, social worker case managers, and a pastoral caregiver.
It's possible to continue curative treatment while also receiving comfort care.  This type of care is called palliative care and it is different from hospice care.  While hospice care usually requires that patients give up curative treatments, palliative care does not. 
In fact, palliative care is valuable at any time during a serious illness.  Patients can continue to fight their disease, while palliative care focuses on improving their quality of life.

Palliative care services for the seriously ill, their caregivers, families, and loved ones include:

  • Curative or life-prolonging treatments
  • Relief of physical suffering
  • Attention to emotional needs

For the patient going through life-prolonging treatment, palliative care increases the likelihood that they will be able to cope with therapy and maintain a satisfying quality of life.  For the dying patient, palliative care, like hospice care, addresses comfort for the patient and preparation of both the patient and family for the inevitability of dying.

Hospice care focuses on relief of physical and emotional suffering and according to Federal law is available to patients when a physician certifies their life expectancy can reasonably be expected to be six months or less. However, doctors will tell you that no one can accurately predict the time of death.  Some patients live well beyond the six month period and are simply re-certified.  If a patient's prognosis substantially improves, they can be discharged from hospice and readmitted at a later time.   

Depending on circumstance, palliative or hospice care can be provided at home, in nursing homes, in a hospice center or in a special palliative unit in a hospital.  The hospital option is generally used when adequate pain relief cannot be provided elsewhere.

Sometimes people choose against palliative or hospice care because they think it means giving up.  It's important to know there's a difference between giving up and letting go. 

Giving up generates feelings of helplessness and hopelessness.  Letting go can provide opportunities for you and your family to grow, individually and together.  It can allow families to create memories that are not about pain and suffering but about being able to help their loved one and be with them at the end in a meaningful way.

 

Key Point 3

End-of-life care presents challenges on every level – individually and culturally.  There are steps we can take as individuals and as a society to assist in planning for and managing our own definitions of a good death.  

People who have learned to live with dying have found out how to do something most of us find profoundly difficult -- talking openly about it.  Such honesty is critical if we're to make choices about the manner of our dying and insure those choices are honored.
Unfortunately, these are conversations few families have.  It's up to each of use to start our own conversation – with our families and with our physicians.  It's best to do it before we become ill and not when everyone is emotionally distraught and in crisis.  And it's best to write it as well as say it.

If you become unable to make decisions for yourself and don't have advance directives in place, major decisions about your care may be made without your input.  Your wishes are best translated into written form with advance directives such as the following: 

Living Will.  This is a written, legal document that describes the kind of medical treatments or life-sustaining treatments you would want if you were seriously or terminally ill.  It isn't just for people who want to avoid being sustained indefinitely on mechanical life support. It's a way to spell out personal wishes.  A Living Will doesn't let you select someone to make decisions for you.

Durable Power of Attorney.  This advance directive allows you to designate a surrogate – a person who will make treatment decisions for you if you are unconscious or unable to make medical decisions.

Health Care Proxy.  This is another name for a Durable Power of Attorney.

Do-Not-Resuscitate Order.  This is a request not to have cardiopulmonary resuscitation (CPR) if your heart stops or if you stop breathing.

You may change or cancel advance directives at any time, as long as you are considered of sound mind to do so.

A recent advance in advance directive record-keeping is the Physician Orders for Life-Sustaining Treatment (POLST) or Medical Orders for Life Sustaining Treatment (MOLST) form.  This form provides a mechanism to communicate patient preferences for end-of-life treatment across treatment settings.  They increase the likelihood that an individual's wishes will be honored by allowing physicians to record a patient's preferences regarding cardiopulmonary resuscitation (CPR), mechanical intervention, and other life sustaining treatments a single form as a physician order.  It is not intended to replace advance directives. 

Advance directives are not perfect.  Sometimes they are too unspecific and general to provide clear instruction.  A surrogate may not be present at a critical moment.  And, they simply can't cover every eventuality.  A combination of ongoing conversation with your family and doctor as well as written advance directives is your best opportunity to make sure your end of life wishes will be realized.   

When you look across the spectrum of American society, there are enormous cultural and individual differences in what quality of life and quality in dying means.  Our individual role is to use the tools we've been provided to create the best possible death for ourselves.  But what is society's role?  First and foremost, society must continue it's traditional role of protecting the vulnerable.  More has to be done, though, to change attitudes about dying through education and encouraging public dialog.  As a culture, we need to provide an environment that supports effective pain management and motivate individuals to ponder end-of-life decisions and discuss them with their family, clergy, and physicians.  We have to keep talking – and listening.

Medline Plus

Medline Description: 

Conduct an off-site search for End of Life information from MedlinePlus.  These up-to-date search results are based on search terms specific to Second Opinion Key Points.

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