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Speaking the Unthinkable: Understanding and Making Choices

There is a fear that lies deep inside me. At night it sometimes swells up in my chest and I wonder about dying. I’ve been too afraid to give my fear a voice and so it grows with the darkness but recedes with the light of day. Today I choose to release it by speaking and I ask: How might I be cared for if my cancer is no longer resting in abeyance? What do I want? What will I choose?…

I am struck by how rarely patients, families and physicians talk about one of the most important topics in our lives: death, dying and our choices for care. My concern in writing this article is that many of you will stop reading after the first sentence for fear of dissolving hope and creating anxiety. Despite my concern, I am committed to making this topic more public and I hope that most readers will muster their courage to stay with me and keep reading. It is imperative that we talk about this topic and address the realities, the myths and the resources. Our ability to embrace life is contingent on our desire to push death away, but in this process we do ourselves and our families a disservice if we cannot talk, plan and consider options throughout our lives. We can all humorously acknowledge that “none of us gets out of here alive,” but most of us struggle to make the most basic plans and to communicate those with physicians and loved ones. Until science makes a dramatic discovery, we will each at some point have to face our mortality. Ignoring it will not make it disappear, and acknowledging it gives each person the chance to organize, control and make it an important and meaningful part of their lives.

Medical care with all of its technologies has become disease focused and, as a result, has left by the wayside important aspects of the whole person. Part of what makes us human and different from other animals is our ability to contemplate our lives and to appreciate the possibility of our death. Our existential plight is a gift that we have; it is underutilized. Being diagnosed with an illness is an opportunity to consider the possibilities and to make informed decisions and choices. I am a proponent of evaluating treatments in terms of quality of life and focusing our care on the needs of the patient considering the psychological, medical, social and economic burdens and gains. In order to do this fully, the possibility of dying must always be an acknowledged part of the equation. Eliminating dying in these discussions makes almost every medical discussion and treatment decision incomplete. Patients, family members and physicians must all share in this responsibility to make quality of life and the possibility of death a part of the planning process. Talking about death is not acquiescence and it does not have to undermine hope. Hope takes many forms and can be about quality of each day rather than the outcome of curative treatment.

After 22 years of working with patients and families living with cancer, I am awe struck by how little time we devote to educating patients about their choices for care in the final phases of life. These decisions are often left until the end of an illness when cognition may be impaired, strength may be diminished, family resources are depleted, and nourishment for hope is more difficult. This is wrong! Every person should understand the basic facts about their choices. One of the most important considerations that we should all have is the opportunity to decide about the manner in which we are cared for in the final phase of our lives. When death comes suddenly from an accident we are robbed of this opportunity, but when a disease is diagnosed, we can make choices. We have the opportunity to accept our lives as they are and review them. We have the opportunity to resolve conflicts and to embrace those that we love. We have the opportunity to ask to be embraced with love, and, most importantly, we have the chance to seek physical, spiritual and emotional comfort.
Discussion of myths and the provision of accurate information are essential so I will address the topics of hospice, advance directives, putting affairs in order and thoughts about legacies. While this is not a definitive discussion, it is a beginning and the Ted Mann Family Resource Center can and will assist you in finding more resources.

Hospice Care

Myths about hospice abound. Since this is often talked about late in the disease process, there is little opportunity to debunk the myths and provide accurate information. Hospice is a concept of care more often than a place. When it was first introduced in England it was a place where a special kind of care was provided for patients who no longer responded to or were interested in aggressive treatments. The medical goals of hospice are the treatment of pain and the provision of comfort. In the United States, hospice care is usually provided in the patient’s home, a family member’s home or in a nursing home. Hospice care is designed to deal with the emotional, social, and spiritual impact of the disease and to provide physical comfort and support to patients and their families when a life-limiting illness, such as cancer, no longer responds to cure-oriented treatments. Hospice care is not goal driven to prolong life nor is it meant to hasten death. The hospice philosophy promotes comfort, pain control and dignity during the final stages of life.

Patients enroll in hospice when their physicians believe that life expectancy is anticipated to be six months or less. Patients may live longer or shorter than six months, depending on their disease and when they are referred. Physicians often have a hard time determining life expectancy and referral to hospice is often made when patients are very close to death.

Hospice stops medical procedures and treatments that are unnecessary and do not add to the quality of a patient’s life. Hospice works with family and caretakers to make a comprehensive individualized plan of care. The hospice team consists of physicians, nurses, aides, social workers, spiritual care givers, counselors, therapists and volunteers. All are trained to provide pain and symptom management for the patient. They are also trained to support the family.

Many patients are reluctant to accept hospice care because some medical procedures are stopped, curative treatments end and they fear that they will not be cared for medically. Medical care is provided, but the goal of care is focused on quality of life. Blood tests and diagnostic tests are often stopped because they are not needed. These tests often disturb the patient and may be invasive or painful. Procedures that cause discomfort or pain are avoided unless there is a sound justification to warrant them. When treatments and diagnostic procedures are stopped patients and family members often react with anxiety. After all the tests, all the procedures, all the time spent trying to cure or halt the progression of cancer, it can be difficult to adjust to doing what seems like little or nothing. It may be difficult for some to adjust to the change at first. Some may see it as failure. It can be helpful to reframe these thoughts in terms of the changed goals and expectations for care. It is natural to feel grief and loss at this time. Talking about the changes openly is a way of coping with the loss and refocusing goals. I believe that having discussions about hospice earlier in the process and understanding the potential movement from curative intent to palliation or comfort can help to prepare patients and families to view this as an important potential component of the process.

There are many different organizations that provide hospice care. Most states require hospices to be licensed. The Health Care Financing Administration certifies hospices that provide Medicare covered hospice services. The Joint Commission for Accreditation of Health Care Organizations accredits hospices as well. Hospice care is usually covered by medical insurance including Medicare. There are over 3,000 hospices in the United States and Puerto Rico.

The hospice team comes to the patient. Hospice care begins with an assessment of the patient’s physical condition, pain, support system and physical environment. Before providing care or making a plan, the patient’s personal physician often makes a referral to hospice and provides hospice with key information about the patient’s disease, treatment, and life expectancy. The hospice physician reviews this information. During the initial evaluation, a plan is formulated and decisions are made regarding what services, supplies, and education are needed to help support the patient and family. Patients have the right to accept or decline any forms of service. The day-to-day caretaking of the patient (feeding, bathing, turning if bed bound, and administration of medications) is done by the family not hospice. The hospice provides support to the family and offers assistance and tools. Hospice staff and volunteers will assist with the traditional physical care tasks such as bathing, managing pain medications and arranging for medical equipment, supplies and therapies. Hospice staff help patients and families talk openly about feelings and wishes and help the family cope with the changing situation. For patients who desire spiritual support, clergy may be an active member of the visiting team.

Deciding on hospice as an option can be done at anytime throughout the patient’s disease status. Discussions should be ongoing between patients and physicians about the timing of the referral. Many patients are being treated with palliative means, comfort rather than cure, for a substantial period of time prior to a hospice referral. They are often referred to hospice at a very late stage in the process and as a result, the patients and families do not benefit from the full range of services. Patients may initiate contact with hospice organizations and find out about the resources that they offer. The staff of the Center is available to talk to patients and family and help them explore the potential options so that if and when hospice care is needed, there can be a smooth transition at a time when the patient and family are not in crisis.

It is important to remember that hospice care is a resource to assist patients and families in providing comfort and pain management. It can enable patients to live at home, surrounded by their friends and families, and belongings. It can help keep patients out of the hospital and focused on quality of life. Signing up for hospice does not mean that life is over. Rather, it is a recognition that life is limited and that the remainder of life should be lived with dignity and comfort. Because the plan is individualized, the degree of support and intervention will be determined by the needs of the patient and family. A patient does not have to be bed bound, comatose or actively dying to be on hospice. One misconception is that hospice is a form of euthanasia (assisted suicide). Hospice is never euthanasia. Hospice is end of life care.

Health Care Power of Attorney/Advance Health Care Directive

The Advanced Health Care Directive is now the legally recognized format for a living will or a Durable Power of Attorney for Health Care and replaces the Natural Death Act Declaration. If you have any one of these, you have already made some plans. The Advance Health Care Directive is a means of communicating what you want regarding your health care and allows you to appoint someone to speak for you, should you be unable to speak for yourself. It is important that every person, whether they have a diagnosis of cancer or not, think about completing one of these forms, available in our Resource Center. They provide you with an opportunity to consider how you feel about interventions and under what circumstances you might want these used or withheld.

The Advance Health Care Directive allows you to state your wishes about refusing or accepting life-sustaining treatment in any situation. By completing this in advance, talking to the person that you designate and sharing your feelings with your doctor, you are increasing the likelihood that your desires will be met. Different people have different feelings about being resuscitated, prolonging a dying process, being placed on a ventilator or use of other artificial life supports.

Considering the wide range of issues when one is seriously ill and/or debilitated can be quite difficult; therefore, it is important to spend some time in advance thinking about what you want and articulating it. It can be very helpful for your family. One of the psychological benefits is that family members are not forced to try to figure out what you would want at a time when they may be upset and overwhelmed. The absence of your wishes can lead to more distress on the part of the family and in the event of your death, may leave them feeling uncertain or guilty about decisions they made. As a psychologist, I think that while it is uncomfortable to plan for one’s incapacitation or end of life, the benefits to knowing that you have done this and the comfort that you may extend to your family is worth the temporary distress. Decisions can be revised as situations change simply by completing a new form. In an ideal world, we would all make these decisions and review them every few years to determine whether our thoughts and feelings have changed. The Resource Center has staff available to discuss these issues and can help you find answers to your questions. The Advance Health Care Directive forms are available in our Center and can be obtained from Patient Relations in the Medical Plaza and UCLA Hospitals. I urge you to make this a priority for you and your family.

Putting Affairs in Order

When people are afraid to talk about death and dying, they are also unable to talk about what will happen after a death. There are many issues that need to be addressed by the family. Discussions need to take place around issues such as burial, cremation, funeral and memorials. Individuals often have strong feelings about these topics. These discussions should not be left until the final stages of life or after death occurs because one’s ability to think clearly is often impaired. There are suddenly many decisions to make and arrangements to be made and not always enough energy to do them all. Preparations in advance can save psychological energy and financial resources.

I would like to remind patients and family members that it is important to think about issues such as guardianship if there are minor children, how possessions will be distributed, who will inherit and/or supervise the estate. Putting affairs in order means making certain that your family knows the financial situation, where to locate information and what you want. Even if your estate (cash and assets) are minimal, a trust can prevent the hassle and expense associated with probate. The more you are able to talk about these issues and think through the consequences, the better prepared your family will be. For more information on the preparation of legal documents such as trusts and wills, consult an estate planner, a lawyer or seek advice from the Cancer Legal Resources Center. Below is a list of questions that might be helpful in generating conversations and stimulating thought around these issues:

  • Are there children who need guardianship and, if so, who will this person be?
  • Has a trust been formed and funded to avoid probate?
  • Is there a will?
  • Is there life insurance? Have the appropriate beneficiaries been specified?
  • Where are the documents located? Do the right people know where to find them?
  • Do the people who will be responsible for financial concerns have the information that they need? Lists of bank accounts, policies, etc.
  • Has there been a discussion about what will happen after a person dies?
  • What will happen to the body? Burial? Cremation?
  • Have arrangements been made and financial considerations taken into account?
  • Is there a plan for a funeral? A memorial?
  • What would you like at the funeral or memorial?
  • Poems? Music? Special people to speak? Are there parts of your life that you would like shared? Specific rituals or meaningful moments?
  • Do you want a charity to receive gifts in your memory? Have you directed someone to organize this?

Your Legacy

One of the most difficult aspects of thinking and planning for these issues is acknowledging and experiencing the loss and grief that is an inevitable part of this process. For the patient, loss often begins at the time of diagnosis and can be ongoing. Loss of innocence, loss of life without medical concerns, loss of physical abilities, loss of hair, loss of parts of one’s body or certain functions are a few of the many changes that produce these feelings. It is important to grieve these losses as they occur.

In the midst of all of this, many people also find rewards and blessings. There is an awareness of the greatness of each day, and thankfulness for the deep connections between themselves and others. Patients and families that can find deeper appreciation or meaning in life often feel psychologically bolstered through the process. As one contemplates the potential loss of life, it is also helpful to think about the legacy that one leaves. Legacies can be big and small. Children, gestures of kindness, or memories are legacies to our life on earth. Pondering these legacies while one’s energy is strong provides the opportunity to devote some energy to one that may be special. One legacy that some people consider is making something for their families. In this day and age video and audio recordings are easy to do. The simplest legacies are words that come from the heart. Writing letters to special people in your life can be a wonderful gift that you leave. Children (grown children and little children) benefit from letters or journals. I have seen patients write special notes for children or grandchildren for their special birthdays or weddings. Friends and extended family members often appreciate these gestures as well.

Some legacies are financial gifts that may provide services for others in need. The Ted Mann Family Resource Center has been able to offer our services to patients because of individuals who have engaged in planning their giving. Most charities welcome estate gifts or will recognize gifts given in memory of individuals. These are ways to give back and to leave a legacy.

Think about using some of your time after a diagnosis of cancer to write or record some of the following legacies:

  • Expressions of love, care and thankfulness
  • A list of the 10 best things about a person that you appreciated
  • Hopes and expectations for the future
  • Stories about when you first met, thoughts, feelings
  • Remembrances of any kind about times you spent together that you really appreciated
  • Funny stories about your family, friends or yourself
  • Family history
  • Your values

For those who stuck with me to this paragraph, congratulations on being willing to look at the range of possibilities. I hope that you will use this as a stepping stone for pondering your options, considering what you want, and talking to your doctors and families. Please feel free to contact the Center if you would like some help in exploring any of these issues in greater depth. Addressing these issues is a means to exercise your control and right to choose.

. . . I choose to treat my pain. I choose to talk about life from beginning to end. I choose to be touched, comforted and told that I am loved. I choose to be clean, dry, and safe. I choose to be offered food and fluids, but not have them forced upon me. I choose to acknowledge that like you, my life on earth is temporary. I choose to be surrounded by people that I love. I choose to seek comfort. I choose to be remembered. I choose . . .

Anne Coscarelli, Ph.D.
Wallis Annenberg Director’s Initiative in Psychosocial Oncology

© Anne Coscarelli, Ph.D. All rights reserved. 2003.
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