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Bonnie Lawrence, Family Caregiver Alliance
Bonnie Lawrence, Family Caregiver Alliance
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Many recent news stories have focused on right-to-die issues — what options might we want, and what control can we exert, as we approach the end of life? When death is sudden and unexpected, there are few choices, and if there has been no preparation for this moment, events will unfold as medical and emergency staff see fit. But when illness is chronic or prolonged, or when pain, frailty and old age impact the quality of life, there are measures we can take to have our wishes respected, to share those wishes with others, and to request a dignified, comfortable death.
An NPR story last year examined why some health care providers are hesitant to discuss end-of-life measures, even with seriously ill patients. There are many reasons: not enough time; not wanting the patient to give up hope; discomfort with the topic. One suggestion has been to initiate a physician-patient discussion about end-of-life issues automatically each year. Not all patients welcome the discussion, but sometimes the increased feeling of control actually can make patients with long-term illnesses feel better. They can decide, for example, to refuse certain medical treatments. They can decide if they want “heroic measures” — feeding tubes, CPR, ventilators, defibrillators — to prolong their lives when a desirable quality of life (however one may define that) might not be possible.
Making these decisions isn’t easy, and for family members and friends, accepting these decisions may be challenging, even traumatic. In our recent NewsHour columns, we talked about Advance Directives, hospice care, and other measures designed to make — as much as possible — the end of life a more peaceful transition for the patient. But watching someone you love slip away can be so overwhelming that it is instinctive to want to do everything possible to keep that person alive, even against their own wishes. How do you accept letting go?
Sometimes we hear from our clients that the person they are caring for wants to discuss these matters, but they or their family members are reluctant to face the issue. Below are some ideas to help begin the process to help clarify decisions about the end of life. Experts advise that you begin by thinking and talking about values and beliefs, hopes and fears. Consult with health care practitioners when you need more information about an illness or treatment.
Consider first the questions below:
Then, if you have the opportunity, and before a loved one is incapacitated, try to explore these more specific questions:
Write the responses down, and share with family members. To formalize the process, you can complete an Advance Directive and POLST (Physician’s Orders for Life-Sustaining Treatment). Both documents can be revised at a later date if you wish.
A note: This process is not appropriate for everyone. There may be historic, religious or cultural differences within families that affect their willingness to discuss these deeply personal matters. If it makes sense to bring up these topics, do so. If it is not something that your family is comfortable with, you might not be able to get the answers you seek. You can try again at a later time — or perhaps not at all. Families have their own dynamics, and for some, this discussion simply may not be achievable or desirable. In the case of a serious illness, events will unfold as they may. That is also a choice, and must be respected.
Even after the conversations are held and legal documents completed, reaching acceptance that a person is dying is a difficult path for the individual who is ill as well as for their family members. The person who is ill doesn’t want to cause grief. She may feel there is unfinished business within the family — a reconciliation not completed, an “I love you” never stated out loud. He may be fearful of pain, of the loss of control, of the loss of dignity. And of course family members share these fears. They may dread the grief or fear of losing this critical person in their lives. They may want to attempt the very measures — the heroic measures — that the individual specifically stated he or she does not want.
Despite the pain of grief for those we love, being able to let them go is not about our needs, nor about the physician’s need to try to heal even in the face of impossible odds. It is about what our loved ones need and want to reduce their suffering and help them die in dignity. When those wishes have been talked about, and when they are in writing, a family has the comfort and assurance that they are doing the right thing if they are asked to give permission to accept comfort measures instead of life-sustaining interventions.
A natural process sometimes occurs as an illness progresses. As death nears, many people feel a lessening of the desire to live longer. Some people describe a profound tiredness. Others may feel they have struggled as much as they have been called upon to do and will struggle no more. A family’s refusal to let go can prolong dying, but cannot prevent it. Dying, thus prolonged, can become more a time of suffering than of living.
Family members and friends may experience a similar change. At first, we may adjust to managing a chronic illness, then learn to accept a life-limiting illness, then accept the possibility of a loved one’s dying. Finally, we may see that dying is the better of two choices, and be ready to give the loved one permission to die. The dying person may be distressed at causing grief for those who love them, and, receiving permission to die can relieve their distress. There is a time for this to happen. Before that, it feels wrong to accept a loss, but after that it can be an act of great kindness to say, “You may go when you feel it is time. I will be OK.”
At the time a person is near death, sometimes touch is the best communication. Gentle stroking of a hand or a cheek, and quietly reassuring the person that you love them and that you will be all right is perhaps the most compassionate way to ease your loved one on his journey. In a situation where you are not present at the time of death, forgive yourself and know that you did the best you could to make the final hours or weeks of life peaceful and meaningful.
Each individual grieves in his or her own way and for an unpredictable amount of time—there is no “correct” way. Grief affects us emotionally, physically and spiritually. There is a deep understanding that nothing will ever be the same. Grief is most acute when someone dies or shortly thereafter, but there are also the effects of “anticipatory grief” and what is sometimes called “ambiguous loss.”
When someone has a long-term illness such as terminal cancer or Alzheimer’s or Parkinson’s disease, we may begin a grieving process long before the person passes away. Particularly when an illness causes cognitive or memory decline, we grieve the person who used to be. They were our partners, our siblings, our parents. We remember their personalities, their intelligence, energy, talent, humor. They were our best friend, companion, adversary, advisor or confidante. As those characteristics fade with increasing illness, we start grieving their loss. The body may be there, but the person has changed irrevocably. It may have been difficult, frustrating and exhausting to care for the individual, and sometimes, caregivers see death as a relief. As a consequence, for many family caregivers, there is an extreme feeling of guilt over that relief. This is not an unusual reaction, but if the emotions persist, counseling or support groups may help you get through the conflicting and troubling feelings.
For other people, there is a delay in feelings of grief, or the feelings may be buried or expressed in different ways — withdrawal, anger, escape through drugs or alcohol, or intense involvement in work. Grief reactions may be unexpected and waves of painful memories may assault you at unpredictable times. The anniversary of a person’s death or other important dates can be particularly tough. However the process unfolds, take care of yourself, cry when you need to, seek solitude if that helps, and try to give yourself the space you need to reach an even keel.
While the passing of time will not erase feelings of loss, the intensity will ease somewhat as months and years go by. If you find it too difficult to move on with your life, you may be facing situational depression. Find time to talk with a grief counselor or attend a grief support group (often available from hospice). It is very important to take good care of — and be kind to — yourself. The organizations and resources listed below, or those in your personal or faith network, may also be able to help as you move through this profound experience — one we all must face at some time in our lives. One that makes us human.
Compassion & Choices
Hospice Foundation of America
National Hospice and Palliative Care Organization
How to Care for Aging Parents
by Virginia Morris
More Helpful Publications from Family Caregiver Alliance:
Family Caregiver Alliance
National Center on Caregiving
785 Market Street, Suite 750
San Francisco, CA 94103
Family Caregiver Alliance (FCA) offers an extensive online library of free educational materials for caregivers. The publications, webinars and videos offer families the kind of straightforward, practical help they need as they care for relatives with chronic or disabling health conditions.
Family Care Navigator is FCA’s online directory of resources for caregivers in all 50 states. It includes information on government health and disability programs, legal resources, disease-specific organizations and more.
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