• Planning for the End of Life: Do It for Your Family

    IMAGE Can there truly be such a thing as a "good death"? If the patient's wishes are honored, the experts say, yes, there can be grace in saying good-bye to one's own life.
    "It's more about quality of life at the far end of the continuum, actually, than death itself," says Jessica Klinghoffer, executive director of Hospice of the Valley near San Francisco. "Addressing emotional fears and anxieties, tying up loose ends with friends and families, and having a chance to leave memories for their loved ones all contribute to a good death."
    Long before patients and their families reach that point, though, there are early processes and decisions that can help to ease the transition.

    Talking About Death Is Difficult

    "It is tough to imagine your own death, but I have been surprised by how many people want and need to talk about it," says Helen Beum, clinical coordinator of the Compassion in Dying Federation. She adds that "such frank discussions often give patients added strength to face their illness, and peace of mind that their family understands and supports them."

    Doing the Legal Paperwork

    Most states recognize documents known as "advance directives." These include:
    • Living will—This is a document that states what your medical wishes are in the event that you cannot make decisions.
    • Durable power of attorney—This is a document that designates someone to try to implement these decisions on your behalf if you cannot make them yourself (for example, if you become too ill to make your wishes known). It need not be a family member. You can designate a friend, pastor, or caregiver.
    Make sure that these documents are witnessed appropriately and that copies are placed in your medical chart at your doctor's office, your hospital chart if you have one, and at home in a fireproof, safe place. Advance directives are not only intended for the elderly or those facing terminal illnesses. "Anyone over the age of 18 would be prudent to have a set of directives written and legalized," says Kimberly Hickey, clinical nurse specialist at the University of Michigan.

    Understanding Durable Power of Attorney

    A signed durable power of attorney implies that you and your designee have discussed such issues as:
    • Religious or spiritual beliefs that might influence your end-of-life care
    • Whether you believe life is worth extending at all costs
    • Where quality of life fits into those beliefs
    • Whether you want your life extended if you no can longer function physically or mentally without life support
    It is helpful to have decided beforehand where you want to spend your last weeks. Some people feel more comfortable surrounded by healthcare professionals in a hospital setting, while others would rather be at home if possible.

    Talking to Your Family and Friends

    The most important thing is to make your wishes known to people you trust and who agree to honor your wishes. Give careful thought to your decisions, and be very specific about such life-extending treatments as artificial ventilation, nutrition, and hydration. "We should make these decisions before we ever become terminally ill," says Klinghoffer. "We do our families a favor by making our wishes known formally, in writing, before anything happens."
    June Summers of Boston agrees. Called to the hospital because her father was in a coma after collapsing, she and the rest of the family were told that the coma was most likely irreversible.
    June's father had prepared a set of advanced directives, in which he stated his wishes. In the event of brain death, he did not wish to be kept alive by artificial measures and did not want his life prolonged under any circumstances. He had discussed this at length with his doctor, his wife, and his children. The documents had been witnessed, and there were copies in his hospital chart, his doctor's office, and at home in the filing cabinet.
    When it became clear that there was no brain function, the doctor was able to implement the last wishes. And because the father had discussed those wishes with his family, they were comfortable with the decision to let him go. He was allowed to go in peace and dignity with his family by his side.

    Making the Tough Decisions

    It is difficult for family members to decide which healthcare measures should be provided to someone in the last stages of life.

    Pain Relief

    In most instances, pain can be managed with medicine taken orally. When that is no longer possible, there are other options, such as a skin patch, to deliver the pain medicine.

    Food and Drink

    More stressful are the issues of eating and drinking. Should a patient in the last stages of life be forced to take nutrition and water? The answer, according to a growing consensus of end-of-life experts, is "no." Although it sounds cruel to withhold food and water, it is not. "So long as the intention is to alleviate suffering, such treatment is considered ethical, moral and well within the bounds of accepted medical practice," Beum explains.
    "Nutrition can prolong life beyond what is meaningful," Kimberly Hickey explains. "It can prolong suffering." Lack of nourishment, she explains, allows the body to shut down in a peaceful way. Kidney function is reduced, resulting in "a kind of delirium and loss of consciousness without pain. For the most part, lack of nourishment is a peaceful way to go."
    Force-feeding, on the other hand, can cause indigestion, nausea and vomiting, diarrhea , and constipation in a person who is near death and can contribute to pneumonia. Giving unwanted liquids can cause difficulty in breathing.

    Having Hospice Help

    Patients can qualify for hospice care as soon as a terminal diagnosis (eg, six months or less to live) has been made and emphasis has changed to quality of life, rather than a cure.
    All hospice patients do not travel to a separate facility; most die in their own homes. Hospice care also can be given in nursing homes and hospitals, and the patient can be moved from one setting to another, depending on need. Hospice care begins with a referral from one's doctor and includes nursing, social work, pastoral care, medications, supplies, and equipment (such as a hospital bed).
    Choosing a hospice is similar to choosing any other healthcare provider, says Robert Arnold, MD, director of Palliative Care at the University of Pittsburgh Medical Center. "People should ask what the hospice will do to ensure good comfort care," he says, "and they should ask [for] data about…whether the hospice would engage in certain interventions that might make a person live longer if the quality is good. Most importantly, I would ask to talk to families who have been through the hospice to try to get a sense of the things they do well."

    RESOURCES

    Dying Well http://www.dyingwell.org/

    Hospice http://www.hospicenet.org/

    CANADIAN RESOURCES

    Canadian Virtual Hospice http://www.virtualhospice.ca/

    Hospice Palliative Care Ontario http://hpco.ca/

    References

    Advance directives. Hospices website. Available at: http://www.hospicenet.org/html/directives.html. Accessed July 20, 2011.

    End-of-life decision-making. Family Caregiver Alliance website. Available at: http://www.caregiver.org/caregiver/jsp/content%5Fnode.jsp?nodeid=401. Accessed July 20, 2011.

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