When a loved one is diagnosed with a terminal illness, it’s important to prepare yourself for the practicalities of their death, as well as the inevitable emotional upheaval. In these instances, it’s common to begin grieving before the person actually dies. Death becomes something to wait for, marked in days, weeks or months. Death from a terminal illness is often a slow process; a gradual shutting down of the faculties. All we can do is prepare to say goodbye for the last time. Show
Know their wishesAccording to Sunlife, only 1% of the UK know what their loved one’s last wishes are, and 22% of people don’t know any of their wishes. If you can, find out what they want for the funeral, and ask if they have any arrangements already in place, such as a funeral plan. It might seem morbid to bring up funeral arrangements, but it shows a desire to consider their wishes and means the funeral will ultimately be more personal to them. It’s important to ask these questions in a delicate manner, by explaining that you’re concerned about what will happen after they die, and want to make it as simple as possible for everyone involved. This is also a good time to ask if there is a will in place, and if so where it is kept. If they don’t have a will and are still in good health, now might be a sensible time to write one. It may not be practical to do this, and in this instance there is a protocol for what to do when someone dies without a will. You need to respect the choices they make, and accept there may be differences of opinion. Spend time with your loved oneSpend time in their presence. As their condition deteriorates, this is one of the most important things you can do. Talk to them if they have the energy. Otherwise, be there, so they’re not alone, and be honest. Don’t hide your emotions from them or try to be strong, it’s OK to let them know you’re scared, confused or sad. The situation may feel uncomfortable, but don’t let this stop you from saying, ‘I love you’, and, ‘I will miss you when you’re gone’. Say what you need to, or else you may always regret it. This is time you will cherish in the future, and will help you in difficult times of grief. Take care of yourselfWhen you’re dealing with sorrow, take care of yourself – eat well, sleep well, do activities that help you relax. Beyond this, it’s important to care for your emotional health. You may feel overwhelmed by emotion. You’ll just be recovering from one wave of grief, when you’re struck by another. Find someone unaffected by the circumstances who can offer you support. Don’t feel guilty for practicing self-care; you can’t help others until you’ve helped yourself. Contact anyone who might wish to see themGet in touch with family and friends. The person may wish to do this themselves, or may need your assistance. Do this in good time so everyone can say their goodbyes and spend time with them. You should talk to children in the family and explain to them what is going to happen. Be clear, and do not gloss over the reality of the situation. If you’re unsure whether or not your loved one wants to see someone, ask your loved one before contacting them. Research the conditionThis may be as simple as talking to the carers or nurses if they are at a hospital or hospice. You may wish to research the illness on the internet. Speak to the person directly, and ask, ‘How can I make things easier for you?’. Your aim should be to provide the best care and best possible quality of life for that person. As death approachesThe person will appear quite changed to their normal self. Signs they are nearing the end include:
This is a natural part of the body preparing to shut down and you should be alert to this, so that you can contact family in time. Alongside the natural closing down of the body, there is often a concluding of all affairs in that person’s life. People on the verge of death may feel compelled to hold on to life, feeling a duty to the living to be present. It’s important that you give the person permission to go, as holding on will only prolong their pain. This desire to stay can be caused by unresolved conflict, for example if two family members have fallen out, or if one person in the family is still travelling to say their goodbyes. Show your love on a united front, put aside old wounds, and let their last image be the faces of all their loved ones sat around. As death nears, many of their senses will deteriorate. Hearing, however, is often unimpaired right up until the last few moments, so even if they are not responding physically it is not to say they cannot hear you. Don’t be deterred to speak from the heart and say all you need to. Equally, don’t say anything in front of them that would be better said in private. Once death has occurred, there’s no need to ring 999 if the death was expected and has resulted from an illness. Get in touch with the family doctor if at home, or if at a hospice or hospital inform the staff.
By Charles A. Corr , Ph.D., CT, and Dona M. Corr , RN, MS in Nursing When someone you love is dying, you have 2 important jobs. 1. Attend to the care of the person you love.That can mean you yourself provide most or all of the care that your loved one requires. Alternatively, it can mean you arrange or help to arrange assistance and guidance from professionals and volunteers who have the expertise your loved one needs. Most often, what your loved one requires will call for a combination of care that you provide and care that others provide. 2. Take good care of yourself.Many people who are devoted to a loved one who is dying disregard or minimize this second responsibility. They say things like, “It is my loved one who is dying. He (or she) is the one who needs care the most and who needs all my attention at this time. I’ll get by. Don’t worry about me.” Those are well-meant comments, but they fail to appreciate one simple fact: unless you take good care of yourself, you will not have the energy and all the other physical, psychological and spiritual resources you will need to take care of your loved one. Persons who are dying are important because they are living human beings. The reason they need assistance is to maintain as much quality as possible in their living each and every day. You, too, are living each day and you are also important. You may need assistance to help you have as much quality in your life as possible at this difficult time. You don’t have to be dying to be important! Both of these important jobs will be addressed throughout this article. Dying in our society todayThe vast majority of people who die in our society today are 65 years of age or older. Typically, they die of chronic or degenerative diseases. Other causes of death that are growing in importance, especially among the “oldest old” in our society, include Alzheimer’s disease and other forms of dementia. Dying trajectoryYour loved one may or may not be an older adult. In any event, if you are reading this article it is likely that you want to know what you could or might be doing prior to your loved one’s death. Professionals might say you are finding yourself in the middle of a dying trajectory, the period between the diagnosis of a life-threatening illness and its outcome in death. About dying trajectory:
In short, whatever your situation, you and your loved one may currently be facing tough challenges. In most cases, advanced end-stage disease may present problems like:
Each of these and other side effects of disease can present challenges to your loved one and to you. If that happens, each will need to be addressed and minimized as much as possible to maintain quality of life. Professional help can greatly assist in these matters. Don’t be afraid to request help or ask questions even about the most basic and simple problems. Basic care needsWhen you think about your loved one’s basic care needs, they are likely to involve such important matters as medications, skin and mouth care, hydration, nutrition, rest and exercise. For all aspects of care, it is important to have a good relationship with any physicians or other professional care providers who may be involved. They can explain your loved one’s disease and treatment regimes. Ideally, they can help you anticipate how some major events will unfold. They can also help you and your loved one prepare for decisions that may be called for as your loved one approaches death. Those decisions can affect end-of-life care and some events that will arise after your loved one’s death. You will especially want to be clear about:
You can play an important role in helping to ensure that your loved one takes the right medications in the right doses and at the right times. In addition, you can report any reactions to medications or other matters of concern to the professionals involved. For the bedriddenFor ill persons, especially those who are confined to a bed or wheelchair, attention to skin care is most important. You can help avoid the development of bedsores (skin ulcers) by helping to position your loved one appropriately and by changing his or her position regularly. Frequent bathing and the using of soothing lotions is also recommended. For mouth care, you can help ensure that your loved one brushes his or her teeth regularly and rinses his or her mouth, perhaps with a prescribed solution. Good skin and mouth care minimize the likelihood of complications and contribute to comfort. HydrationHydration is one of the most fundamental of all human needs. Fluids keep the body alive and contribute a great deal to comfort. So it’s good to focus on simple drinks like juices and water. These are certainly better than alcohol or caffeinated drinks, which have a tendency to dehydrate the body. Keep in mind that in far-advanced disease, bodily organs like kidneys and bladders may experience a decline in their functioning. Sips of water, crushed ice, flavored swabs and some hard candies may be all that is needed to maintain oral comfort. NutritionNutrition also supports life and vital functioning. Giving chicken soup to those who are ill is one classic way of providing both fluids and nutrition in a tasty and manageable form. You will know your loved one’s favorite foods and may be able to provide them in appetizing ways. Too much food on a plate may be unacceptable at this time and hard for an ill person to manage. Several smaller meals, each with smaller portions, may be more acceptable and more appealing. If your loved one is receiving medical care, intravenous fluids (IVs) or other forms of nutrition ordered by a physician may provide all the nutrition he or she needs. RestWe all need rest, especially when we are under strain. You can help your loved one in many ways to get the rest he or she needs.
ExerciseExercise for ill persons can involve walking around the block, in a park or in a backyard if that is feasible. When confined to bed, it often takes the form of simpler activities, such as stretching muscles, manipulating soft objects or flexing arms and legs. A physical therapist can point out exercises that are most beneficial for your loved one. Hospice and palliative care programsIf the care your loved one needs is too complex or too burdensome for you to provide on your own, you may wish to consider enrolling in a hospice or palliative care program. Some people think of these programs as “giving up” on life, but that is not actually correct. Enrolling your loved one in a hospice or palliative care program represents:
2006 hospice statisticsIn 2006, according to statistics from the National Hospice and Palliative Care Organization, American hospice programs served over 1,300,000 patients, approximately 870,000 of whom died while receiving hospice care. Those deaths represented about 36 percent of all Americans who died that year. It’s hard to imagine this many Americans would choose hospice care at the end of their lives if they did not believe this was a good way to cope with an anticipated death. Also, over 74 percent of those who died under hospice care in the United States in 2006 were able to die in a place they called home—a private residence, a nursing home or other residential facility. This contrasts sharply with the general population of Americans nearly half of whom died in an acute care medical facility. (Not everyone who enters a hospice program dies; 220,000 persons were discharged from American hospice programs in 2006.) Being at home, in a familiar environment, as long as possible, is an important value for many when death is imminent and for their family members. In addition, research reports have demonstrated that family members believe hospice care improved quality of life for their loved ones and have shown hospice care can even extend life for some individuals. More can be done for your loved oneHospice and palliative care programs have made clear it is never true to say to a person with a terminal illness, “There is nothing more we can do.” Hospice provides:
Choosing hospice care helps avoid an end-of-life period that is lonely, mechanical and dehumanizing. Under hospice care, your loved one is likely to find he or she is respected both as a person and as an individual. Both you and your loved one can be sure you will never be abandoned. And you can know you and other family members will receive the support you need, both while your loved one is alive and after his or her death. Loss and grief reactionsAs disease progresses, your loved one and you are likely to experience a number of losses. Past, present and anticipated losses
Grief reactionsThese and other losses you may already know all too well are likely to generate grief reactions as they are experienced. The term “grief” refers to the reactions that one experiences when losses upset the usual routines of one’s life. Grief reactions may be :
It is wholly appropriate for one to experience grief in the face of loss. And it is only to be expected that any 2 people, no matter how long they have been together, may experience different reactions, since the losses they are encountering act on them in slightly different ways. Honoring each other’s grief reactions is fully consistent with maintaining the bonds of affection between you and your loved one. Your loved one’s copingAs your loved one faces the challenges associated with his or her disease, together with the losses that it brings, you will observe how he or she copes or tries to manage the situation. You can also reflect on your own coping efforts to understand yourself and your behaviors better at this difficult time. In general, it is thought that there are 3 basic types of coping approaches. Coping strategy #1: Understand and assessThis broad coping strategy involves efforts to understand and assess what is happening, or to reframe one’s interpretations of these events, for example, by viewing the glass as “half full” rather than “half empty.” Here the focus can be on what one still has and what can be done with the time available, rather than on what one no longer has. Coping strategy #2: Take actionAnother coping strategy involves efforts to do something about the problems one faces. For example:
The resources one draws upon depend on how one evaluates a need for outside assistance. Coping strategy #3: Reaction managementA third coping strategy involves efforts to manage one’s own reactions to the situation. Here one might seek to find meaning in one’s life and approaching death, or to turn to sources of religious or spiritual consolation. At the same time, a person whose death is imminent might seek to:
Respect each coping strategyMost coping by individuals involves tactics and strategies learned over a lifetime of confronting challenges and losses. It can be undertaken in different ways at different times and in different situations. Typically, coping is a highly individual process. As such, it is most often good to respect the efforts that persons make to cope, rather than to seek to alter, confront or disregard them—unless, of course, they are causing direct harm to the person coping or to others who are involved. Life reviewJoining with your loved one to engage in a life review process by reminiscing about his or her life can be beneficial for both of you and for other family members as well. As death becomes imminent, individuals often feel some urgency to reflect on their lives. If they have time, they seek to sum things up to achieve a sense of wholeness about themselves and about the meaning of their lives. Tell your loved one how they have impacted your life.In so doing, it is often important for them to be told about the impact their lives have had on the lives of others. So this is an activity that can be shared with other family members and close friends. Sharing photographs and memories can stimulate this process, as can documents that have been created for precisely this purpose.
Unfinished businessEngaging in processes of life review is really one way of helping your loved one sum up his or her life and address unfinished business that may seem incomplete or disturbing. Advanced directivesOther ways to do this involve such matters as advance directives to guide the end-of-life care that he or she does or does not want to receive. If your loved one has not completed an advance directive, he or she may be worrying about the decisions that will be made when he or she is not able to participate in making them. Living wills and powers of attorneyLiving wills and durable powers of attorney in health care matters (sometimes called health care proxies) that appoint an agent or substitute decision maker to determine how things should go are designed precisely to address such issues. They can be obtained from any healthcare provider or from an attorney. A user friendly version of these documents called “Five Wishes” is valid in many states and can be obtained in both English and Spanish versions for a nominal fee from:
Discussing such matters can be a good thing in itself for both you and your loved one. Getting such documents in place can help your loved one to feel confident that his or her wishes about treatment will be recorded and respected. Advanced planning of funeral or memorial servicesYour loved one may also wish to be involved in planning his or her funeral or memorial services. This may seem premature to you, but experience has shown that many individuals whose death is imminent want the rituals that will follow their deaths to reflect the values and wishes they believe have (or should have) characterized their lives. This type of advance planning can also relieve you and your family members of some of the burden of responsibilities that will follow your loved one’s death. Advanced planning addresses such matters as:
Estate planningPerhaps you and your loved one have already engaged in estate planning. In particular, this would mean that both of you have your own wills in place to ensure that property will be distributed as each of you wishes. This can help avoid many difficulties and complications that often arise after a death. Even if you do have existing wills, you might wish to revise them in light of circumstances that may have changed since you first consulted an estate attorney. Living trustsIn addition, if you have not already done so, you might also wish to establish revocable living trusts and transfer ownership of as much of your property as desirable or possible to the trusts. (This transfer of ownership is often called “funding the trust”). If both of you are trustees of both of your trusts, each of you can act if the other becomes unable to do so. Also, when one of you dies the survivor continues as trustee and the trust maintains ownership of its assets without having to involve the probate process. For all of the above matters, it is highly recommended that you consult with your attorney, financial planner or other appropriate professional. Nearing death awarenessAs the death of your loved one comes close, researchers have noticed that individuals often engage in distinctive types of communications that reflect what has been termed nearing death awareness. Careful attention has shown that such communications may involve either:
In either of these alternatives, the possibility that a dying person is attempting to share an important communication suggests that such messages should not be dismissed as empty expressions of confusion. On the contrary, it is essential to engage in a process of active listening when your loved one seeks to share something regarded as personally important in the last moments of his or her life. Choices in coping with dyingThe choices you make when your loved one is dying can help you appreciate the time you now have together. They can enable you to use that time as well as you can to benefit your loved one, yourself and others who are involved in what is going on. These choices also help prepare you for what lies ahead. As a result, it is fair to say that these coping choices are a way of empowering yourself. A broad range of reactionsSome people have focused on a limited number of psycho-social reactions that have been described as typical of persons who are coping with dying. Often, those reactions have been linked together as “stages” in what has been thought to be a specific way of coping with dying. When your loved one is dying, it would be far better to think about a broad range of reactions and responses that you and your loved one might be experiencing. There are not just 4 or 5 ways for anyone to react to or live out his or her dying, any more than there are just 4 or 5 ways of living out all the other parts of one’s life. The basic lesson arising from an emphasis on a broad range of reactions and responses that you and your loved one may be experiencing is this: We should listen actively to each individual person who is coping with dying.If we fail to pay attention to individual human beings in this way, we could find ourselves labeling them in a hurtful and harmful way. That is, we would be allowing ourselves to rest content with generalizations about those individuals. As a result, we would blind ourselves to the unique and distinctive qualities of each person who is coping with dying. Don’t treat your loved one as if he or she were only a generalization and not an individual, unique person. Also, don’t treat yourself or allow others to treat you as if you were any less than your loved one. Tasks in coping with dyingInstead of focusing solely on reactions to the fact that your loved one’s death is imminent, think about the tasks—physical, psychological, social and spiritual tasks—that you and your loved one might want to undertake in this important period of your life together. The very notion of tasks suggests endeavors or undertakings you might or might not wish to take up. You can begin a task, leave it for another time, or work on it for a while and then set it aside. All of these choices imply empowerment. Coping tasks involve an active process, a doing with a positive orientation, not just a defensive reaction against challenges in living. Physical tasksPhysical tasks when death is imminent might concern:
Your loved one may need expert medical and nursing assistance with some physical tasks. But you, your family members and even some of your friends can also help to provide nourishing food, as long as they realize that your loved one may no longer have a good appetite. Psychological tasksPsychological tasks that you and your loved one might undertake concern security, autonomy, and richness in living. SecurityIt’s important for your loved one to feel secure even when death is imminent, to know he or she is safe and will receive the care that is needed. AutonomyYou and your loved one will also want to be in charge of your life as much as you can be, even when there undoubtedly are limits to what you can control or influence. Here, your loved one might use his or her autonomy to make as many decisions as possible or perhaps might designate a trusted person (you or someone else) to make decisions on his or her behalf. Richness in livingSecurity and autonomy contribute to richness in living. So, too, do little things like opportunities for a regular bath or to dress in comfortable and attractive ways. For many people, personal dignity and quality in living are enhanced by having a taste of a favorite food or continuing a lifelong habit of drinking a glass of wine with meals. You will know best the people and the things that contribute to your loved one’s security, autonomy, and richness in living, as well as to your own. Social tasksSocial tasks when death is imminent concern personal attachments that you and your loved one value, as well as interactions with society and its social groups. For example, you and your loved one may or may not at this time be interested in politics, former duties at work, sports, fraternal organizations, or a large circle of friends. Instead, your loved one and you may prefer to focus on a narrower scope of interests and a more limited group of important family members and friends. Spiritual tasksReligious or spiritual tasks are likely to involve seeking ways to identify or formulate meaning for your loved one’s life, death, suffering, and humanity. Your own search for meaning in these matters will be equally important. You both may want to feel that life is meaningful and thus worthwhile. In addition, the 2 of you may also want to feel connected with others and with the divine or the transcendent in your lives. That may especially involve some type of hope, whether:
There is no universal goal to achieveIn all of these tasks, there is no universal goal that you and your loved one have to achieve. There are no particular reactions or set phases that have to be lived through and no specific goal or type of closure that must be accomplished before death occurs. Dying is a part of living. Each of us has lived his or her life differently; so, too, each of us can die his or her death differently. For most of us, how we die is likely to be similar to how we have lived—at least how we lived in difficult times in our earlier years. For all of us, there is no prescribed path or preordained mold that we must follow or fit into in the critical time at the end of our lives. Empower yourselfDying persons can empower themselves by making choices to get the most out of their lives during this very pressured but also very precious time. Even when death is imminent, it has not yet arrived and the central thing to keep in mind is how a dying person is coping right now. Much of this also applies to you as you walk alongside your loved one. Challenges, losses and copingChallenges and losses are inevitable in life. They are especially pressing when death is imminent. None of us can escape such challenges in the long run; we can only decide how we will cope with them. Unless you simply abandon your loved one, you will inevitably be drawn into the challenges, losses and coping in his or her life, and you will simultaneously be facing your own challenges, losses and coping demands. The well-known “Serenity Prayer” speaks directly to how you and your loved one might cope with challenging situations. The key elements in the prayer tell us that when we are coping we need:
Life changesAs your loved one is dying, both of you will be confronted with many changes in your lives. You can adapt to those changes and may already have done so in many ways. In so doing, you are engaged in coping with all that those changes involve, and especially with the losses they entail. Things to consider as you cope:
It is likely that you will cope with your present situation in ways similar to those that you used to cope with difficult times in your life in the past.
You may have coped differently in different times and/or in different situations. You may also be aware that you and your loved one have coped differently even when you were faced with a common set of challenges. Pay attention to how you have coped and are coping, and honor your loved one’s coping strategies and tactics insofar as possible. When death is imminent, neither you nor your loved one are obliged to cope in any specific way. The only exception is to try to avoid coping behaviors that are directly harmful to you or to those around you. Share burdensYou may mistakenly think that you and your loved one are completely alone in struggling with his or her disease and imminent death. That’s not at all true. You needn’t carry the entire load. Professional programsProfessionals and volunteers in hospice and palliative care programs are available to help in nearly every community in the United States. Their services are typically covered by Medicare, Medicaid, managed care or private health insurance and charitable donations. Assistance can also be obtained from other health care and social services programs. Family and friendsIn addition, family members, friends and neighbors may offer assistance, although they may not know exactly what you need or precisely how to help. Do not be shy. Ask for what you need. Show them how to help. You are likely to be surprised at how grateful people are to be guided in these ways and how imaginative they can be. It could be as simple as having someone ready the morning paper for your ailing relative. Even if other people just sit and pray or keep company with your loved one for a few hours in an afternoon or evening, that can provide welcome companionship for your loved one. It can also be an opportunity for you to take a break to attend to your own needs. Don’t minimize the value of a little free or recreational time for yourself; it can invigorate you and the care you provide your loved one. ChildrenAnd don’t neglect to involve children. They can run little errands for you or tell your loved one about their daily activities. Simply organizing small chores for children involves them in the activity of caring for their loved one as well as keeping them aware of what is happening. HopeMany who have studied and written about dying have taken note of the persistence of hope in persons who are coping with dying. Hope is an important part of human life. To be truly hopeless is to be desolate, isolated, deserted in a barren and bleak wilderness. There are all too many such individuals in the world today, victims of war, violence, genocide and other maladies. Still, descriptions like this do not necessarily—and need not—apply to most individuals for whom death is imminent.
Hope for a curePerhaps we all hope that our own situation and the situations of those we love will be at least a little better while we are dying and after our deaths. Here, hope for a cure often may give way to hope for an appropriate death. Keep in mind that it is perfectly appropriate for you and your loved one to hold onto many hopes at the same time, not all of which need be completely consistent. Acknowledging the imminence of one’s own death does not preclude that person from hoping for something important in the future. Hope for a reduction of agonyUntil death arrives, your loved one, you and most of the rest of us are likely to be hoping that whatever it is that may be making us uncomfortable or causing distress will be reduced or removed from our lives. Achieving a reduction from agony to a far-less disturbing ache may not be an example of reaching complete bliss, but few would reject it as an unwelcome accomplishment. Grounded in a changing realityAs long as you and your loved one are alive, you can both be full of hope. Your hopes may focus on getting well, but more likely they will focus on what can yet be done. Hope is grounded in reality, by contrast with unrealistic wishes or fanciful desires. As your situation changes, your hopes are likely to be fluid, often altering their focus to adapt to changes in the actual realities within which you find yourselves. Stay hopefulHope has great therapeutic potential. It can help to uplift your lives in difficult moments. Don’t let yourself or others tell you that you and your loved one can no longer be hopeful when your loved one’s death is imminent. Parting wordsMany individuals—perhaps you and your loved one are among them— seek out opportunities when death is near to share important sentiments with each other. Examples of such sentiments might include:
Permission to stop strugglingIt is important to realize that a time may come when your loved one needs to end the struggle to hang on to life and may seek relief in death. In such circumstances, as difficult as it may be for you, you can give your loved one permission to stop struggling. Doing so may be a great and perhaps final gift you can make to your loved one. A difficult but precious timeWhile you are caring for your loved one who is dying, you already know all too well the many pressures of this difficult time. Keep in mind also how precious is this time you still have together. Your time togetherThe 2 of you can choose how you will live this time together. You can “make today count” as one man recommended. You can make decisions that will make a difference in your shared life right at this moment and in the lives of those you love. You can reflect on the life you have shared together, seize upon opportunities still open to you, and prepare yourself (at least in part) for the future that is ahead of you. To make these choices and decisions is to try to cope with the challenges and possibilities presented to you and to address any unfinished business that might be important to you. And you can continue to be hopeful, even as you share important words of love and parting. Keep livingDon’t stop living before the life of your loved one ends or before your own life ends. Live your life as fully as you can each day. About the authorsCharles A. Corr, PhD, CT, is professor emeritus at Southern Illinois University Edwardsville and a member of the board of directors of The Hospice Institute of the Florida Suncoast. Donna M. Corr, RN, MS in nursing, is a former professor of nursing at St. Louis Community College at Forest Park. Chuck and Donna have been teaching in the field of death, dying and bereavement for over 30 years. They are both long-term members of the International Work Group on Death, Dying, and Bereavement, where Chuck was chairperson from 1989 to 1993. Between them, the Corrs’ publications include more than 30 books and booklets, as well as over 100 articles and chapters, including the 6th edition of Death and Dying, Life and Living (Belmont, CA: Wadsworth Cengage Learning, 2009), co-authored with Clyde M. Nabe. |