Coping with Dying: How Individuals Can Help Caring for a person who is dying is not easy, but can be rewarding and rehabilitative for the caregiver. Family members will have different gifts and abilities in this area, so each person needs to be honest about what s/he can feel comfortable doing. There are 4 dimensions of care that are required: physical, psychological, social and spiritual, so there are opportunities for each person who wants to be involved. Human and Professional Tasks- not all care needs to be done by professionals. Little acts communicate being cared about, not just being cared for. The picture on the first page of this chapter showed a person in a hospital bed with a dog beside him. Many people gain more comfort from the company of their pets than from many people. As the book says, “The secret of the care of patients is still caring.” One of the biggest concerns for many dying people is being abandoned, as well as losing control over their bodies and lives, and suffering pain or distress. AT St. Christopher’s Hospice in London, the leader of the hospice movement has said that dying persons ask 3 things of those who care for them: 1) Help me 2) Listen to me 3) Don’t leave me And whether you are able to offer physical care or not, it is important that you offer an empathetic presence to the dying person. Dimensions of care: 1) Physical- this particularly involves minimizing pain or distress. a. Acute pain- this pain is actually adaptive, in that it alerts us to serious assaults and risks of death. Doctors get much information from patients by assessing their pain levels. Not all pain is due to the condition that is killing the patient and should be assessed dispassionately. b. Chronic pain- does not assist diagnosis or protect the person. When it is intense, it is hard to think about or do anything else except experience it. Reducing such pain can truly improve one’s quality of life. It used to be an issue, in that doctors or patients would resist serious pain meds, fearing some sort of addiction. This isn’t logical when the person is dying, however. What is tricky, however, is finding the right combination and level of meds to reduce pain without knocking the person out. Pain meds can come in pill form, IV, patch, & suppositories. Generally, when the person can self- administer pain meds through a pump, s/he will use less medication yet control the pain better. There are other methods of pain control, as well: biofeedback, meditation, guided imagery, therapeutic touch, & self-hypnosis. Physical activity can reduce the pain of sore or tight muscles and bed sores, too. Gentle exercise, such as in a warm pool can allow the patient to sleep better without meds, as well. Of course, pain meds used at a certain dose can produce terminal sedation, which must be ethically assessed. The right med is important, as well, since pain can come from several sources- skin, muscle soreness, inflammation, pressure, or damage to tissue. Some drugs act very fast when pain relief is needed immediately, but they also have some side effects, such as scary dreams (morphine.) Addiction does not need to be feared when used for pain relief, since the drug is used to pain relief. The person may become physically dependent on the narcotics, but this can be managed as the person needs less narcotic. Too weak a dose is ineffectual in pain management, so this causes needless suffering. Once the person believes his pain will be managed well, he can relax and may not need as much drug. Other sources of discomfort: constipation, diarrhea, nausea, vomiting, weakness, skin ulcers, infections, loss of energy, loss of appetite, shortness of breath. Other things such as loss of hair, changes in skin quality or color can be distressing. Dehydration is a problem as well, but an IV may not be the solution, as it forces the body to keep processing fluids or food when it is in shut-down mode at the end. So caregivers need to be educated in how best to help the person at the appropriate time. Forcing a person to eat who does not want to is not humane. 2) Psychological- caregivers, especially family, may not be equipped to manage the dying person’s anger, sadness, fear, pain or venting, but someone needs to. There may be no right thing to say, but simply listening sympathetically will be helpful. The caregiver needs to find a way to allow the feelings to flow without trying to make it all go away to ease one’s own pain and discomfort. It is normal for a person who is dying to feel a lot about it and s/he may express anger towards others who are not in that place. Usually the safest person is the one who gets the brunt of it, since the person feels this person will not abandon him at such a critical time. While telling a dying person, “I know how you feel” isn’t helpful- you don’t know- it is helpful to listen and give him permission to express anything. It’s not good to try to talk him out of his feelings. He’s probably been doing some of that all his life, and now it’s critical to really examine and feel his feelings. Simply being present, making eye contact, gentle touching, may help the person break through to the deeper feelings. Active listening says to the person, “Your feelings and needs matter. They are important to me.” Empathy or compassion differs from sympathy, in that sympathy is offered from a distance, even may seem patronizing, like pity. Massage may help the person become more comfortable with touch and enable her to let down the walls of self-sufficiency. Other people only want company when they feel up to it- feel like they look all right and have some energy to be engaged. Some are very uncomfortable for any but their professional caregivers to help them with private matters in the bathroom, for instance. These individual needs should be respected and not perceived as rejection. Some people may need therapy or appropriate meds to deal with depression, confusion, or hallucinations. Therapy for people at the end of life is not necessarily about cognitive support for them in making major inner changes, but about empathy and aid in making some decisions. Therapy and caregiving needs to be relevant to what the person perceives the need to be. 3) Social- within our relationships we desire safety and security. These relationships allow us to think about end of life issues and work through problems as well as possible. Of course, not every dying person has created loving, supportive relationships. Usually as people enter this stage of life they become more selective about the relationships they wish to continue. Relationships require energy, and not all are positive in this. Some people are still concerned about work relationships and their financial issues, as they understand the cost of their care. They also worry about what shape their family will be in if they can no longer earn a living for them. Family can not just ignore or pass off these concerns, they need to actually tell the person how they will manage. Other members of the family may have to act as advocates to insure financial aid through institutional systems, and this is no small feat. 4) Spiritual- these concern search for meaning in life, maintaining connectedness to self and others, and the relationship with the divine. These concerns may shape many decisions for people, depending on how they have concerned themselves with these things over the years. People ask deep questions, trying to reassure themselves that their lives have been worthwhile, or that they can hope to go to a specific afterlife. They often want to retell their own life stories. And they don’t need many questions from you to ascertain interest. They just need to be heard. Objects, places, rituals, sacraments, prayer and laying on of hands may all be meaningful to the person if you can arrange them. Some people need to experience a communal ritual event, birthday, holiday, wedding, before they can let go. So the caregiver’s job is help the person maintain hope and understand what that person needs to accomplish to feel okay about the spiritual walk. Music, creativity, social events, group therapy and other things may enable the person to feel in touch with himself and others. So the real challenge to caregivers is to listen and hear what the person is really saying about what is important at this time. We may feel we have handled that concern, but if it’s coming up again, the person is still concerned on some level. Tasks as guidelines for helping It is important to understand the dying person’s values about life and not necessarily impose your values on them. This may even mean turning down their requests if you feel they violate your value system (aid with suicide, for instance.) Also caregivers need to assess the strain on their own resources and make sure they attend to their own needs as well as their family members. Hospice offers help in giving family members a break for their own needs during this trying time. There is a process for family members facing the death of a member. This ranges from a preparatory phase from the time when symptoms first appear, through diagnosis, a middle phase of living with the reality of a fatal illness and the caregiving tasks, and a final phase of acceptance of death, into the process of saying farewell to the person. A genogram of the family can aid caregivers in understanding the dynamics of the family and what resources different members bring to the table. Other practices that may help include media or books, rituals, and suggestions or coaching in managing the demands. Coping tools need to be specific and concrete and relate to what the individual needs at that point. This requires open communication with the dying person to understand what s/he feels is important. This also enhances autonomy and allows the person to feel s/he is still making important decisions for him/herself. This fosters security, that nothing will be forced on him/her that does not feel right. Tasks that dying people deem important may not feel important to us, but it is not for us to determine that. They still need to live out their lives in a way that works for them. Sometimes caregivers can make suggestions about tasks that may benefit the person in the long run, but be difficult in the short term. As much as caregivers may want to make all the misery and bad feelings go away, this is not always possible or desirable, since this communicates to the dying person that the caregiver can’t handle their pain and discomfort. Even simple gestures can communicate acceptance and desire to help. Keep in mind that what you think would be desirable may not be helpful to the person and you should not feel rejected by their non-compliance. If you can offer hope, that may be helpful, but if not, it may be enough to share the value of the person’s life- even small things a person does can be measured as valuable to others. Asking about the person’s past life experience may or may not be a positive thing- only the person can tell you that. Practical Suggestions for Caregivers 1) Keep your needs and interests separate from the other person- don’t try to project your needs on them. 2) Recognize that the dying process is profound and individual and some tasks simply must be faced by the person him/herself. (Silence is valuable, too.) 3) Respect the meaning/ values of the person for whom you are caring 4) Reinforce the person’s decision-making capacity and support his/her decisions 5) Reminisce with the person regarding his life and its meaning Effective Communication- Are acts of communication responsive to the needs of the dying person? Are they carried out in a thoughtful way? Context may be more important than content. Today we believe being honest with people over these issues is best, but these things are hard, so tact and consideration need to be employed. Nearing death awareness means that communication from dying people are often dismissed as confusion, when s/he may be seeing spirit people, angels, as well as hearing a reassurance from beyond. There may also be instructions given regarding people or things left behind. It does the person no favor to dismiss or try to put him/her off- this may be important to him/her and s/he can’t relax into the dying process without some reassurance these things will be taken care of. Active listening allows the listener to respond helpfully when s/he hears these things. The challenge of helping others: 1) keeping company with the dying and others who are coping, even when that makes the helper uncomfortable 2) learning how to identify and respond effectively to the physical, psychological, social and spiritual tasks that the person must negotiate How to break bad news: 1) Set up the physical context in a helpful way, preferably do this face-to-face 2) Listen to know what the person already knows 3) Listen to find out how much the person wants to know 4) Share the information in small chunks, check the person’s feelings, clarify any problems, listen for the person’s concerns 5) Respond to the person’s feelings 6) Make some plans for the future Helping Helpers: Stress, Burnout, and Self-care Self-care is essential for caregivers if they are to manage the demands of a stressful, open-ended situation. In the beginning they may not want help, as they think they can manage and to ask for help would be shameful. Helpers can’t manage everyone else’s needs and put their own on the back burner forever. There needs to be a balance in meeting the other’s needs as well as one’s own needs. This is called detached concern or detached compassion. Caregivers need to recognize their own wounded state and be respectful of that. Stress and burnout in helpers are not limited to family members. Nurses and hospice care workers also reach burnout if they don’t create a balance. The stress may not be from working with dying people and their families as much as other work-related problems. Sometimes these issues can be remedied if the person recognizes what the real problems are. Hans Selye is quoted regarding stress management: “first… seek your own stress level…and live your life accordingly… second is to choose your goals and make sure they’re really your own,…third… is altruistic egoism- looking out for oneself by being necessary to others, and thus earning their goodwill.” Good helpers need to evaluate their own strengths and weaknesses, be open to support from others- even the dying person, and find means of coping that feel legitimate. Suggestions for Self-Care 1) be proactive 2) adopt an active strategy of coping (don’t wait until you are about to explode to explore better methods) 3) Set limits 4) Compartmentalize the demands 5) Stress-hardy outlook: reframe problems as opportunities for growth, try to balance commitments to self and others, find a way to feel you are in charge of some elements of life, even if it is just in your attitude, humor… 6) Practice the art of the possible, be patient/ creative 7) Improve communication skills 8) Rejuvenate yourself- enjoying a massage doesn’t mean you don’t care 9) Know yourself and be gentle toward yourself 10) Develop a positive view of yourself and your skills 11) Strengthen your social support network (accept or ask for help when it is offered) Hope is not limited to hope for continued life. People hope for many things even in the face of death. Dying people may just hope to make it to the next holiday and be able to see all their family together. They may hope that an estranged person will forgive them, or that they can forgive that person and heal a rift. They may hope for a peaceful, painless death. Few situations are completely hopeless and hope alone may remedy serious problems. “…hope, which centers on fulfilling expectations, may focus on getting well, but more often focuses on what yet can be done” (Davidson, 1975, 49) Each person determines the object of hope.