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Posts Tagged ‘Terminal Illness’

Caring for the terminally ill – 3

By faith Jacob, when he was dying, blessed each of the sons of Joseph, and worshiped, leaning on the top of his staff. Hebrews 11:21 (NKJV)

 

We finish Paula Spencer Scott’s[i] list of nine facts you need to know to decide if hospice is right for you or a loved one:

Hospice can enrich, and sometimes salvage, the last stage of life. Almost a third of those with a terminal illness die in the hospital, many hooked up to machines that do little to halt the process of dying and which can be very painful or uncomfortable instead.   The purpose of hospice is to provide support for the more personal aspects of this final life stage.  Hospice can help the patient reflect on their legacy and life meaning, focus on relationships in a deeper and more intentional way, achieve a sense of closure, and realize any end-of-life goals, like attending a grandchild’s graduation or getting their financial affairs in order.

Hospice is for the entire family.   It can be challenging to witness the hallucinations of delirium, or to understand the body language of someone who can no longer speak, or to watch loved ones leaving us slowly but surely. A hospice nurse, social worker, or chaplain can help interpret what’s happening, or explain the signs of imminent death, and help the family help the patient.  And when families need a break, the sick person can spend up to five days at a time in inpatient respite care, such as in a nursing home or hospice facility.

Hospice continues after death.   Many people think that once their loved ones dies, the work of hospice comes to an end as well.  They may not realize that optional follow-up grief support for 12 months is included under Medicare rules.  Anne Alesch, a bereavement counselor who runs separate support groups for surviving spouses and adult children explains that “for many of our families, their journey with hospice is only beginning once their loved one dies.”

When a loved one is dying, it is not just a diagnosis but a person we care about deeply.  Ass Ira Byock says, “We make a mistake in assuming that serious illness and dying are mostly medical. They’re fundamentally personal.”

 

Father God, if the time comes, may I know when to reach out for help.

[i] AARP Bulletin, November 2015, vol.56, No.9 (www.aarp.org/bulletin

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The dying groan in the city, And the souls of the wounded cry out; Yet God does not charge them with wrong. Job 24:12 (NKJV)

 

In an AARP (American Association of Retired People) bulletin, Paula Spencer Scott[i] shares nine facts you need to know to decide if hospice is right for you or a loved one:

If you start hospice and realize it’s not for you, you can stop.  You need to have an ongoing conversation with your health care team in order to decide the best treatment approach you want for your loved one according to their current needs.  The conversation is “ongoing” because goals and needs evolve.

You may live longer during the time you have left.  According to research, patients in hospice care on average live longer than those receiving standard care.  For instance, a 2010 study of lung cancer patients showed that they lived nearly three months longer.  Another study, which looked at the most common terminal diagnoses, found the same, ranging from an average of 20 more days for gallbladder cancer to 69 days for breast cancer.

You can still see your regular doctor.  The basic hospice team consists of a physician and nurse who are on call 24 hours a day, a social worker, a counselor or a chaplain, and a volunteer. Many hospices offer added services such as psychologists, psychiatrists, home health aides, art or pet therapists, nutritionists, and occupational, speech, massage or physical therapists.  But the hospice team does not replace your regular doctor and you are always in charge of your medical decisions.

The goal of pain management in hospice is to enable you to live well, not sedate you.  Pain medicine is not simply intended to make the person sleepy to the point where they can’t interact.  Instead, if you live with pain that is not managed properly, it makes you more tired and irritable, and robs you of quality of life. If drugs like morphine are used, they are intended to treat anxiety and to lessen pain, which has been shown to be undertreated at the end of life, not hasten death or to rob you of interaction with your loved ones, as some people believe.

 

Father, help me to make all these important decisions carefully and to aim for quality of life for my loved ones.

[i] AARP Bulletin, November 2015, vol.56, No.9 (www.aarp.org/bulletin

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Then Israel said to Joseph, “Behold, I am dying, but God will be with you and bring you back to the land of your fathers. Genesis 48:21 (NKJV)

 

Many people still don’t know what hospice is or does.  The place to begin is to understand that hospice is a philosophy of care, not a building.  While most people say they want to die at home, only about 1 in 4 end up doing so.  One of the biggest reasons is because without hospice care it is very challenging trying to care for someone with a serious illness.  Ira Byock, the executive director of the Providence Institute for Human Caring compares it to trying to have surgery without anesthesia.

Hospices bring to your home everything you might need such as a hospital bed, bedside commode, medications, bandages, expert consults, all tailored to your needs.  But if home care is daunting, or you just don’t want your loved one to die in your home, hospice care is also available in facilities and hospitals.  Paula Spencer Scott[i] shares nine facts you need to know to decide if hospice is right for you or a loved one:

Signing up doesn’t mean giving up all medical care.  When you accept hospice care, you are making a shift from one set of goals (how to get longer life through a cure) to another (how to get the best quality of life out of whatever time is left).  Even when a cure is no possible, there are therapies that improve symptoms and raise comfort can continue.  On the other hand, if you feel that you have not exhausted all of your treatment options in search of a cure, hospice may not be for you.  Medicare hospice rules require forgoing curative treatments.

You have to qualify for hospice, but you can opt out at any

 time.  In order to qualify for hospice benefits, either through Medicare or private insurance, two physicians must certify that you have a terminal condition with an expected prognosis of six months or less.  At the end of the six months, patients are evaluated and can remain under hospice care for another six-month period. (more tomorrow)

 

Father God, taking care of a loved one who is dying is a great responsibility but also a wonderful opportunity to show them love in very tangible ways.  If that time comes, help me to do it lovingly.

[i] AARP Bulletin, November 2015, vol.56, No.9 (www.aarp.org/bulletin

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Scripture: (Job 14:12-15 NKJV)  So man lies down and does not rise. Till the heavens are no more, They will not awake Nor be roused from their sleep. {13} “Oh, that You would hide me in the grave, That You would conceal me until Your wrath is past, That You would appoint me a set time, and remember me! {14} If a man dies, shall he live again? All the days of my hard service I will wait, Till my change comes. {15} You shall call, and I will answer You; You shall desire the work of Your hands.

Observation: It is now time for Zophar, the third of Job’s consolation friends, to try to straighten him up.  Job responds to his accusations by declaring that he feels there’s nothing he could do to fight God, if God were angry with Him.  In chapter 13, verses 20-27 we can read his stirring, heart-felt prayer to God, opening his heart to Him.  And then in chapter 14, he expounds as to his understanding of what happens when a person dies; here are a few examples of his theology of the state of the dead:
10  But man dies and is laid away; Indeed he breathes his last And where is he?
11  As water disappears from the sea, And a river becomes parched and dries up,
12  So man lies down and does not rise. Till the heavens are no more, They will not awake Nor be roused from their sleep.
21  His sons come to honor, and he does not know it; They are brought low, and he does not perceive it.

He also expresses His hope in God and for the salvation He offers us all: My transgression is sealed up in a bag, And You cover my iniquity.(v.17)

Application: It’s amazing how well-intentioned, yet heartless, Job’s friends are.  They see their friend suffering through all of his losses, and yet instead of helping him through these tragedies, they assume the judgmental stand that wants to set people right and they set out to prove to Job that all he’s experiencing is the result of his own sin, and he would only repent, God might just forgive him.  Their accusations do not bring any consolation to Job.  In the same way, well-intentioned friends and relatives feel compelled to say something to their loved ones or friends who are terminally ill or who have lost a loved one, and at times use old cliches or explanations that do nothing to alleviate the pain.  The result may be more pain, more confusion, or if they are fortunate enough, they may not even remember what  has been said.  When you think of it, no explanation, no matter how good or theologically correct it may be, can take away a person’s pain.  What good is it to say to a mother who’s lost their child in a tragic accident, “God has a plan for you”?  Or how does it help someone dying of a terminal illness, “I know how you feel”?  Or how can it possibly help your widowed friend to hear the words, “One day you may find somebody else who’ll make you happy again”?
Several years ago I wrote an article which was published by the Adventist Review giving practical steps to take to help a friend or loved one who is dying of a terminal illness.  Here are the suggestions I offered:

1. The ministry of presence. Most people feel uncomfortable, maybe even afraid, to talk about death and dying. Therefore, when they hear that a friend, loved one, coworker, or schoolmate has been diagnosed with a terminal illness, they stay away. In reality, what you say is not what matters to the terminally ill person or their family, but rather the fact that you cared enough to come be with them. However, respect their privacy and always call beforehand. If they are in a hospital, you must not only respect visiting hours but also be conscious of the fact that those visiting hours may be the only time the family gets to spend with their loved ones. Make your visits brief.
2. Listen. More important than what you say is how much you listen. While most people’s greatest fear is not knowing what to say, if you go prepared to listen and let the terminally ill lead in the conversation, you might find that death is not all that’s on their mind. They just want someone to talk to.
3. Empathize, don’t proselytize. If the person who is dying does not share your beliefs, this is not the time to try to convert them to your belief system; to do so may cause more anxiety than assurance. For instance, several of my patients talked about going to heaven after their death. Rather than lecturing on the state of the dead, I would say something like “As Christians we have a special hope, don’t we?” or “That’s a comforting thought, isn’t it?”
4. Offer practical help. Many people take the easy way out at the end of a visit with the standard offer “If there’s anything I can do, just let me know.” The reality is that during these difficult times the challenge for the patient includes thinking about what needs to be done or asking someone to do it. It would be better to offer to do specific things for them–mow the lawn, wash clothes, or run errands such as grocery shopping. Sometimes an offer to stay with the person who is ill to relieve the caregiver for a few hours can be the welcome help they need.
5. Watch for special events. People who are terminally ill seem to have control over when, where, and how they die. One of my patients waited until the day after his daughter’s birthday, and the night he died he was so restless that his wife decided to sleep in the living room. When she woke up the next morning, he was dead. He had chosen not to die before or on his daughter’s birthday, and he didn’t want his wife to see him die. Others wait for loved ones’ or their own birthdays, anniversaries, graduations, baptisms, weddings, and other special occasions. Be aware of this fact as it may help you get an idea of when they might die.
6. Fear of dying or of death. One of my patients told me he was afraid. I asked him if he was afraid of death or of dying. He said, “I’m not afraid of death; I just don’t want to die in pain.” Most people are afraid of the dying process, and not of death itself. In his case I assured him that we in hospice would do all in our power to keep him comfortable and without pain or discomfort. That assurance helped him relax and enjoy the last few days of his life. If the person you’re visiting expresses such fears, clarify what the source of their fear is, and if they are uncomfortable or unable to answer, ask someone else who may be better able to answer.
7. Help them to die in peace. In hospice we have learned that those patients who struggle the most in their dying process seem to be the ones who have strained relationships with someone. It may help them to ask, “Is there someone you would like to see or talk to?” Offer to contact the person they’d like to speak with. If the other person is not willing to speak with the terminally ill patient, you can facilitate the expression of their feelings by offering options such as, “If you could talk to them, what would you tell them?” You may offer to help them write a letter that they can then choose to mail or burn, thus symbolizing their having taken the step of reconciliation. Many patients wait to die until after they see someone they care about, so you could offer to help make the contact.
Another way to help them die in peace is to pray for and with them. The medical field has come to recognize the benefits of praying for those who are ill. We need not feel the obligation to pray for healing; it does not reveal a lack of faith, but recognition of the inevitable. When I pray with and for members or patients who are terminally ill, I pray for comfort and peace, courage and strength, hope and renewal of love for themselves and for their loved ones.

Instruments of Peace
Dying can be a difficult and painful experience, or a special memory for their loved ones. You can be instrumental in making it as comfortable and comforting as possible by carefully doing for them what they need as they write the last chapter in their earthly life.

Prayer: Father, help us to be such instruments in Your hands that we may bring Your comfort, not so much by what we say but rather by what we do to help those experiencing illness, sadness, or pain.

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