Coping with Dying by tyndale


									                      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
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
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

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
     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.

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