Frequently in serious illness, treatment decisions must be made quickly. It is not uncommon for relatives to have differing ideas about the best course. Some may feel their loved one should pursue aggressive treatments. Others may feel that therapies such as radiation and chemotherapy do not offer enough benefits given their negative effect on the limited time their family member may have.
It is medical custom for the physician to turn to the patient for a decision. Many cultures would agree with this protocol. However, many cultures consider treatment decisions a family matter. When relatives disagree about how the patient should proceed, or the patient feels differently than does the family, it might help everyone to examine their assumptions about treatment and illness. The more each understands the other’s position, the easier it will be to communicate and to respect the final decision. Medical anthropology sheds insight into this process with the questions below. There are no “right” answers. These questions are simply a means to generate deeper understanding and appreciation for each person’s point of view:
Who should be involved in decision making?
What do you think this illness does? What is its natural course?
Why do you think this illness or problem has occurred?
How do you think this condition should be treated?
Who do you think is the most appropriate to turn to for help with this condition? (Depending on the person’s interpretation of the condition, practitioners other than medical doctors may offer more-appropriate treatment.)
What does the patient feel is necessary in order to have an acceptable quality of life? How will that be accomplished given the current situation?
In addition to working toward mutual understanding, gather all the medical information you can from your doctor or from reputable sources such as the national organization dedicated to your loved one’s condition (e.g., the Alzheimer’s Association, the American Cancer Society, or the American Heart Association). However, as much as information from the medical side can supplement the conversation, understand that these facts alone are not the only considerations. Beliefs and emotional responses, no matter how unscientific or irrational, are a significant part of how humans make decisions. If treatment decisions do not match with the patient’s attitudes and beliefs, he or she is unlikely to adhere to them. To get cooperation, it is important that the patient feel comfortable with how the decisions were made.
If your family is having trouble with the decision-making process, you may want to call in an objective third party for assistance. Social workers, clergy and counselors are professionals who can help clarify values and open lines of communication.
Recognizing that a serious illness threatens the future, most families will benefit from creating happy times together. If the patient survives, wonderful! And if not, then you will have created a positive environment for the weeks, months, or days he or she has left.
It may be that relations have been strained with the patient, who, for example, may have been difficult in the past, or unavailable. Many families have old wounds and hurt feelings that go back for decades.
Although it may be worthwhile to process past history, most of the time, when faced with the possibility of losing a family member, relatives decide that their feelings of love are more important than their feelings of anger and resentment. Focusing on a positive closure to the relationship becomes the highest priority.
Whether you are facing a terminal illness or not, resolving difficult relationships is very healing. It lifts a weight that lies heavily on the heart. Resolution typically involves saying five things: “I forgive you. Will you forgive me? Thank you. I love you. Good-bye.”
Many people think that forgiving means forgetting. The latter feels impossible, so they stay forever stuck in the hurts of the past. In truth, it is not possible to forget pain caused by another, especially someone you had expected to be kind and nurturing. It is, however, possible to forgive.
Forgiveness means anchoring an event in the past and understanding it in its own context. At any given time, each of us is doing the best we can given the circumstances and our abilities and resources. It may not be the best that can be done or what we might do at another time with 20:20 hindsight. Understanding this about ourselves allows us to understand and forgive others. Hurts cannot be undone, but we can choose to keep the pain alive or let it remain in the past where it will not cloud the present and the future.
Forgiveness is not always easy. You may have to give up your anger, your justifiable righteousness, or a special position in the family you hold because of what was done to you. If you are having trouble forgiving, it might help to talk with friends, spiritual advisors, or a counselor. They can help you identify what you might “lose” if you allow the other person’s actions to be laid to rest.
Most who have forgiven even egregious incidents describe the experience as very liberating. The process gives you an opportunity to make a much-needed connection with a person who at one time meant a lot to you. Recognizing that the opportunity may disappear, many families faced with serious illness take the plunge and find forgiveness while they still have time to enjoy each other’s company.
For those who are asking for forgiveness, you are taking a courageous and cleansing step. Many people who accomplish this feel uplifted afterward and relieved of a heavy burden of guilt. Although it can be frightening, it is also liberating to honestly and humbly acknowledge your shortcomings.
Most people respond positively to a genuine gesture of reconciliation. But even if the person you care for responds with bitterness or is negative about your request, rest assured that you have done something very powerful to clear the slate. You have opened a place in your own heart and served as a model for others to reach for their integrity.
Thank-yous are free, and there are not enough of them being passed around. Many terminally ill patients have jokingly wished they could be present to hear all the nice things people will say about them at their funeral. So, why wait? Any one of us deserves to be thanked for the many good things we have done during our lives. As well, there are undoubtedly people in our lives who should be acknowledged for their positive contribution.
If you or someone in your family is seriously ill, write a letter, make a phone call. One family held a dinner while the father was still moderately strong, and each of them told him what they appreciated about him and how he had touched their lives. Whether you are the patient or a family member, saying thank you is one of the most powerful gifts you can give.
One day when comedian Steve Martin was sitting in silence with his dying father, out of the blue the father said, “I wish I could cry. I wish I could cry.” Despite his discomfort, Martin pushed through and asked his father, “What do you want to cry about?” To his surprise, his dad said, “For all the love I received and couldn’t return.” Later, when describing their interchange, Martin reflected that it was “as though an early misstep had kept us forever out of stride. Then, two days from his death, our pace was aligning and we were able to speak.”
In the face of pending death or later during the mourning period, one of the most-often heard regrets is “I never got to tell him I loved him.” In her book Facing Death and Finding Hope, Christine Longaker notes that the deepest pain is often the love we held back. Although there may be many valid reasons for holding back, people who work with the seriously ill have found that priorities change, especially near the end of life. One of the greatest gifts of the process is realizing that it is our social relationships that give life meaning. This realization is as powerful for the patient as it is for family members. Expressing our love becomes a top priority.
Although we may not feel comfortable letting go of old positions and risking vulnerability, most families find that taking this risk yields unimaginable positives. If you are uncomfortable sharing your feelings in person, you might want to write them in a letter. For those patients who lack stamina, dictating the letter to a friend or hospice volunteer is also an option. Interestingly, dictating to someone who is uninvolved or whom you hardly know may make it easier to express what is deepest in your heart.
Havelock Ellis once said, “The art of living lies in a fine mingling of letting go and hanging on.” This is true also of sickness and of dying.
If healing is the restoration of balance between mind, body, heart, and spirit, there are times when that balance cannot be met by the spirit remaining in a body that is losing its ability to thrive. True healing, the release from suffering, may require a shedding of our physical form.
It can be very difficult to accept that death is imminent. We know in our minds that it waits for all of us, but our hearts are not always willing to agree. Sometimes we have trouble letting go because there is unfinished business with a friend or relative. Sometimes a simple “I love you” or “Please forgive me” is all it takes to resolve even decades of unsettled dynamics. If there are no unresolved issues in a family, it still can be difficult for the patient to let go and surrender to the inevitable when surrounded by all his or her reasons for staying. For instance, many family members want to be present at the moment of their loved one’s death. However, it is not uncommon for a patient to pass away during the half-hour when a nurse or volunteer remained while all the relatives left a days-long vigil to get something to eat. Guilty as the family members may feel at not having been there for the actual moment of passing, it appears that many patients find it easier to let go when those they love are not in the room.
Often patients know that they are dying, and it is family members who resist the idea. One man in his late thirties, dying of melanoma, related that he had come to terms with dying but found it very difficult to be around his mother. He “knew where he needed to go,” but each day she would visit his bedside with great enthusiasm and energy. Ignoring the wasting of his body, his difficulty breathing, and his struggle with pain, she would exhort him to fight the disease: “We can beat it. You just need to try.” Much as he loved his mother, it took considerable strength for him to weather her daily pep talks. Of course she meant well, but her entreaties took valuable time they could have spent reminiscing, enjoying his children together, or just sitting and holding hands. Ultimately, the last week of his life, she did accept that he was not going to live. She was able to say good-bye and tell him that although she would miss him terribly, she would be okay. She told him that what she wanted most was for him to be comfortable and to know that she was able to let him go. Soon thereafter he slipped into a coma and then gently passed away.
While nobody wants a terminal illness, even in such a frightening circumstance, families do find positives. For instance, many people find that spending time with someone who is dying actually teaches them quite a bit about living. We don’t have to wait for a terminal diagnosis to resolve conflicted relationships. Anytime is a good time to wipe the slate clean and start anew with people who have been important to you.
Whether you have a terminal condition and are actively dying or seem to be healthy with decades yet to live, the truth is that we will all die some day. Our time here is limited.
The “gift” of a terminal illness may be that it encourages both the patient and family members to spend their days—however many they have left—keeping relationships open, clear, and loving.