Question

Explain one of the programs of care for persons who are coping with dying. Describe it and why do you find this to be an effective program and include example of when this program might be used.

Answer 1

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 today

The 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 trajectory

Your 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:

• This can be a more or less lengthy period of decline, sometimes long and complex.
• The last portion of the dying trajectory and death itself often come fairly quickly, within a few days or weeks.
• Professionals may be able to advise you when that time is near.
• Sometimes it involves a relatively steady deterioration, but in other cases it may include periods of strength and wanting still to be engaged in activities with family and friends.
• In the case of many older adults in our society, their dying trajectory frequently involves more than one difficult health condition, experiencing complications from more than one health problem.
• Those problems may interact to obscure what is really going on and to make interventions more difficult.

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:

• Pain and suffering.
• Nausea and constipation.
• Difficulties in breathing.
• Decreased ability to help in one’s own care.
• Some degree of confusion or mental disorientation.

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 needs

When 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:

• Prescribed medications.
• Dosages.
• Schedules.
• Potential toxic effects.
• How all of this relates to your loved one’s disease and symptoms.

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 bedridden

For 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.

Hydration

Hydration 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.

Nutrition

Nutrition 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.

Rest

We 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.

• Manage the environment to keep things quiet in the area.
• Turn lights down or off to provide a less glaring setting.
• Soft music can be helpful.
• Warm bedclothes and proper positioning in a bed or recliner chair fosters comfort.
• Helping your loved one avoid alcoholic beverages and caffeinated drinks before rest or sleep times can make it easier to fall asleep and not encounter sleep interruptions.

Exercise

Exercise 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 programs

If 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:

• A judgment about the realities of things as they currently stand.
• A determination to set aside medical interventions that may be burdensome or no longer offer much hope of a favorable outcome.
• A choice to focus on symptom management and quality of life.

More can be done for your loved one

Hospice 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:

• Professional expertise.
• The skills of experienced interdisciplinary teams.
• Guidance for family care providers.
• Human presence, minimizing disturbing symptoms and improving the quality of life.

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 reactions

As disease progresses, your loved one and you are likely to experience a number of losses.

Past, present and anticipated losses

1. Past losses may involve things like the help one partner used to give another with work around the house, such as:
   1. Doing yard work.
   2. Preparing meals.
   3. Doing laundry.
   4. Taking care of the family car.
   5. Filling out income tax forms.
2. Present losses may involve:
   1. A decline in vigorous physical expressions of love.
   2. A need to devote time to visiting health care providers.
   3. Gradual confinement to a wheelchair or a hospital bed.
   4. Perhaps spending more time sleeping.
3. Anticipated losses may involve:
   1. A recognition that carrying out plans for vacation, travel or retirement may now be unlikely.
   2. An awareness that you may soon no longer have the comfort of the other’s presence.
   3. An acknowledgement that you will need to go on alone.

Grief reactions

These 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 :

• Physical.
• Behavioral.
• Psychological (cognitive or emotional).
• Social.
• Spiritual.

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 coping

As 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 assess

This 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 action

Another coping strategy involves efforts to do something about the problems one faces. For example:

• Your loved one might seek out specialist health care providers or turn the focus to hospice and palliative care programs with their expertise in symptom management.
• Some might place high value on staying home and receiving care there.
• Others might prefer to relocate to a long-term care facility or an acute care hospital with supervision on a 24-hour a day basis.

The resources one draws upon depend on how one evaluates a need for outside assistance.

Coping strategy #3: Reaction management

A 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:

• Wind up cherished projects or carry them forward as much as possible.
• Make efforts to heal personal estrangements.
• Engage in a process of life review.
• Arrange legacies for survivors.
• Settle one’s estate.
• Plan one’s funeral.
• Share parting words with loved ones.

Respect each coping strategy

Most 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 review

Joining 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.

• Some families have made written or video recordings of portions of their life review.
• In other cases, individuals have written out:
  • Moral or ethical wills.
  • Statements that convey their values.
  • Lessons learned in their lives.
  • Things they want to say to others as part of the legacies they will leave for loved ones.

Unfinished business

Engaging 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 directives

Other 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 attorney

Living 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:

• Aging with Dignity (P.O. Box 1661, Tallahassee, FL 32301-1661; tel. 888-5-WISHES [888-594-7437] or 850-681-2010)
• Ordered from the website www.agingwithdignity.org.
• Or, at no charge through any Dignity Memorial® funeral, cremation and cemetery provider.

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 services

Your 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:

• Whether to have a:
  • Visitation.
  • Burial and/or cremation.
  • Memorial service.
  • Religious or nonreligious ceremony.
• Music to be played.
• Songs to be sung.
• Pictures or collages to set out.
• Individuals who should take part.
• The involvement of military or fraternal organizations.

Estate planning

Perhaps 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 trusts

In 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 awareness

As 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:

1. Special awareness of the imminence of death and efforts to describe what dying is like as it is being experienced by the individual.
2. Expressions of final requests about what is needed before the individual can experience a peaceful death.

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 dying

The 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 reactions

Some 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 dying

Instead 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 tasks

Physical tasks when death is imminent might concern:

• Minimizing the physical distress of:
  • Pain
  • Nausea
  • Vomiting
  • Constipation
  • Etc.
• Taking care of fundamental bodily needs, such as:
  • Nutrition
  • Hydration
  • Rest
  • Exercise

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 tasks

Psychological tasks that you and your loved one might undertake concern security, autonomy, and richness in living.

Security

It’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.

Autonomy

You 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 living

Security 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 tasks

Social 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 tasks

Religious 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:

• Religious in nature, such as:
  • To be absolved of sin.
  • To achieve eternal bliss.
• Non-religious in nature:
  • To find one’s place in a reality that is more than just a particular moment in the life of the universe.
  • To become one with the elements.
  • To continue to contribute to the life of society through one’s creations, students and descendants even after one has died.

There is no universal goal to achieve

In 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 yourself

Dying 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 coping

Challenges 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:

1. Wisdom to understand our situation.
2. Courage to change whatever in that situation may be disturbing us and ought to be changed.
3. Serenity to acknowledge or accept those aspects of the situation that are beyond our power to alter.

Life changes

As 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:

• Try to think in a nonjudgmental way about how your loved one is coping so that you can understand what is happening from his or her perspective.
• Think also about how you are coping.
  • Is your coping helping you and your loved one, or is it adding to your burdens?
  • Are there other ways in which you might try to manage your present situation?
  • Could you seek help, for example, to make things easier for your loved one and for you?

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.

• Were those coping strategies and tactics generally successful for you?
• Did they sometimes not work so well?
• If so, why were they not so successful and how can you avoid such problematic coping now?

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.

Palliative care is a form of medical treatment focused on reducing the severity of disease symptoms (such as pain) or slowing the disease's progress, rather than providing a cure. This type of care is typically provided by a team of medical professionals at a medical facility, such as a hospital or nursing home. The goals include making the person as comfortable as possible and addressing quality of life needs (in physical, psychological, and spiritual realms) in the time remaining. Palliative care can be delivered at any point during an illness and for an extended period of time as necessary.

Hospice care in the United States is a specific form of palliative care limited to the last six months of life (determined by a doctor's diagnosis). Hospice care is offered 24 hours a day, and can be provided at an individual's home, a hospice care facility, or a hospital/nursing home.

The focus of hospice care is to provide pain management and medical care, emotional support, and spiritual counseling for the dying patient, and similar emotional and spiritual help and support for family members. Counseling about death, dying, and the grief process; facilitation of making amends and closure; respite care for family caregivers; and bereavement groups and support are some of the services typically provided by hospice. Hospice teams typically include medical doctors, nurses, social workers, psychologists, nursing assistants, trained volunteers, and spiritual advisors.

Hospice care is sometimes covered by private medical insurance and sometimes not covered. However, Medicare will generally pay for hospice services once a doctor has determined that a person has less than six months to live. Out of pocket (not covered by insurance) hospice services generally cost several hundred dollars. Therefore, it is important to be aware of what your private insurance covers and doesn't cover, and plan ahead while still healthy for the possibility that you may one day require hospice services.

Unfortunately, some people do not receive hospice or palliative care before dying. Still others are referred when they are too sick to realize the full benefits of available hospice services. In some cases, a doctor is at fault; he or she may be reluctant to refer a patient because it can be difficult for health care providers to admit that there are no other options for curing a particular condition. Other times, as is sometimes the case with 'macho' men; patients and caregivers may view these types of care as giving up, a "cop-out", or "unmanly". Such attitudes are wrong-headed, of course.

Choosing hospice or palliative care is most decidedly not about "giving up". Instead, choosing palliative or hospice care is a practical, reasonable and very effective method of ensuring that your last days will be as good as they can be. While death may be inevitable, unbearable pain and extreme discomfort does not have to accompany the process. A person who has the foresight and strength to ask for support and care is not a "wimp," but instead a strong and intelligent person who wants to obtain the best care for himself or herself and family during the time he or she has remaining.