Module 12 : End of Life Issues

• Type 1 – A disease in which the body does not produce any insulin, most often occurring in children and young adults.  People with type 1 diabetes must take daily insulin injections to stay alive.  Type 1 diabetes accounts for 5 to 10 percent of diabetes.
• Type 2- A metabolic disorder resulting from the body`s inability to make enough, or properly use, insulin. It is the most common form of the disease.  Type 2 diabetes accounts for 90 to 95 percent of diabetes.  Type 2 diabetes is nearing epidemic proportions, due to an increased number of older Americans, and a greater prevalence of obesity and sedentary lifestyles.

Signs & Symptoms Suggesting Diabetes Often diabetes goes undiagnosed because many of its symptoms seem so harmless. Recent studies indicate the early detection and treatment can decrease the chance of developing the complications of diabetes. Some of the symptoms of diabetes are:

• Frequent urination.
• Excessive thirst.
• Extreme hunger.
• Unusual weight loss.
• Increased fatigue.
• Irritability.
• Blurry vision.
• Poor wound healing.

Treatment

Type 1
Since people with type 1 diabetes no longer produce insulin, they have insulin injections  everyday to use the glucose they obtain from eating. Injection

• Most people use the injection with a needle and syringe.
• External or internal insulin pump, insulin pen, jet injector, or insulin patch are other options, depending on the person, resources and their physician.
• Insulin cannot be taken as a pill. Because it is a protein, it would be broken down during digestion just like the protein in food.
• It must be injected into the fat under the skin for insulin to get into the blood.
• The amount of insulin needed depends on height, weight, age, food intake, and activity level.
• Insulin doses must be balanced with meal times and activities, and dosage levels can be affected by illness, stress, or unexpected events.

Type 2
People with type 2 diabetes make insulin, but their bodies do not correctly use it. Some people with type 2 diabetes need diabetes medication or extra insulin to help their bodies use their own insulin better.

Diet and exercise can often bring blood glucose levels down to normal. When these measures are no longer enough, the next step is the addition of medications that lower blood glucose levels.

Only people with type 2 diabetes can use oral medications; they are not helpful for a person with type 1 diabetes, whose pancreas has lost all ability to produce insulin.

Oral Medication Information:

Go to the link below for a list and description of the six different types of oral medications for diabetes as provided by the Harvard University Joslin Diabetes Center:

Lifestyle is essential to healthy diabetes management

• Diet.
• Weight management.
• Regular exercise.
• Managing stress.
• Good skin care, especially of the feet.
• Daily blood sugar monitoring.
• Controlled amounts of sugar and starch, as approved by the physician.

Well-rounded palliative care programs also address mental health and spiritual needs. The focus is not on death, but on compassionate specialized care for the living. Palliative care is well-suited to an interdisciplinary team model that provides support for the whole person and those who are sharing the person`s journey in love.

Palliative care may be delivered in hospice and home care settings or in hospitals.

Hospice is a model of care that was developed to provide palliative care for the dying. It created the standard for good palliative care through its recognition that the needs of the dying are different from those who expect to recover. Hospice also acknowledges that caring for those who love and take care of the patient is a part of caring for the patient.

Too few know about hospice or take advantage of what it can offer to dying patients and their loved ones. In a 1999 survey by the National Hospice Foundation, only 22% of those who experienced the terminal illness of a loved one used hospice services. 80% of those who responded to the survey did not know the meaning of the term “hospice.”

Go to the links below for further palliative and hospice care information:

• Palliative Care Resource and Information Links
• Hospice Questions and Answers
• Hospice Resource and Information Links

• If possible, have your care receiver complete an advance directive.

Advance directives include:

• Living Will or Healthcare Directive. This document allows one to state in advance his/her wishes regarding treatments that may prolong his/her life.
• Healthcare Power of Attorney or Durable Power of Attorney for Healthcare Decisions. This document allows one to name a person to make healthcare decisions on his/her behalf.Go to the link below to download free Living Will & Medical Power of Attorney Documents.
  http://www.partnershipforcaring.org/Advance/documents_set.html
• If your care receiver doesn`t already have a will, encourage him/her to get one.
  Click here for information on obtaining legal help.
• Know the location of bank, money market, mutual fund accounts, pensions, insurance policies, and retirement accounts.
• Discuss important information about family history, including the location of photographs, heirlooms and other irreplaceable items.

• Funeral planning 19

Funerals and burials are among the most expensive purchases we make.

• In 1999, the average cost of a traditional adult funeral was $5,020 (without any extras).
• Burial costs are an additional $2,000 or more.
• In-ground burial can add another $2,400 to total expenses.
• Flowers, obituary notices, acknowledgment cards, burial liners or vaults, and special transportation can add an additional $1,000.
• Funeral and burial costs combined can easily reach as much as $10,000.

The Funeral Rule
The Funeral Rule requires funeral homes to provide price lists of available options (general services, caskets, outer burial containers). Funeral  homes must disclose prices by telephone and offer lists for review at each facility. You should call or visit at least three funeral homes and cemeteries to compare prices. With three lists, you can more accurately assess the total costs and be able to compare.

What is on the price list?

All available services and their cost, such as:

• Funeral director services for initial conference, consultations, paperwork, and overhead. This fee is added to all bills.
• Transportation of the body to the funeral home and to the place of final disposition.
• Care of the body, including embalming and “casketing,” or dressing the body.
• Use of facilities for a viewing, wake, or visitation, and the funeral or memorial ceremony at the funeral home.
• Other options, such as purchasing flowers, preparing obituary notices, or providing music.
• Alternative arrangements, such as cremation or immediate burial where the body is interred without embalming, usually in a simple container and no viewing or ceremony with the body present.

Caskets and Outer Burial Containers 
A casket is the single most expensive item in a traditional funeral. A 1996 AARP survey found an average price of $1,658. Traditionally, caskets were sold only by funeral homes, but now cemeteries and third parties sell caskets, even on the Internet. Available in many styles and prices, caskets may be made from metal, wood, fiberglass, or plastic.

Under the federal Funeral Rule, a funeral home cannot charge extra if you provide your own casket from an outside source. No casket is required for a direct cremation, immediate burial, or when donating one`s body to science.

Most cemeteries require the use of a grave liner or vault. These outer burial containers surround the casket in the grave to prevent the ground from sinking as settling occurs over time. In some locations, both funeral homes and cemeteries sell vaults and liners. In some areas it is possible and less expensive to purchase an outer burial container from a third party.

Veteran Funerals
If the deceased was a veteran, the U.S. Department of Veterans Affairs provides small burial allowances. All veterans can receive a burial flag and burial in national cemeteries. Burial at no charge may be possible in an area where a national Veterans Cemetery is located. Call 800-555-1212 for the toll-free number of your Regional Veterans Affairs office or visit www.va.gov.

One to three months:

• Withdrawal from society.
• Increased fears, including a fear of being left alone.
• Increased awareness of spiritual and/or religious issues.
• Decreased food intake.
• Increase in sleep.
• Less communicative.

One to two weeks:

• Disorientation.
• Agitation.
• Visual or auditory hallucinations.
• Confusion.
• Picking at clothes.
• Decreased blood pressure.
• Pulse increase or decrease.
• Color changes, pale or bluish.
• Increased perspiration.
• Respiration irregularities.
• Congestion.
• Sleeping but responding.
• Complaints of body tired and heavy.
• Not eating, taking little fluids.
• Changes in body temperature, either an increase or decrease.

Days or hours:

• Intensification of above signs.
• Surge of energy.
• Decrease blood pressure eyes glassy, tearing, half open.
• Irregular breathing, stop/start.
• Restless or no activity.
• Purplish knees, feet, hands, blotchy.
• Pulse weak and hard to find.
• Decreased urine output.

Minutes:

• Labored breathing.
• Unresponsive to stimuli.

Usually the more symptoms the care receiver experiences, the closer he/she is to death. If you are concerned or unsure about how to manage these or other symptoms, please call a health care professional.For further in formation about the dying process see the following:
“Nearing death awareness.”

Simply put, self-care is about meeting your needs so that you are physically, emotionally, and spiritually ready to meet the needs of your friend or family member. There are no rules about self-care except it should help you to feel replenished, comforted, or relaxed.

• Adjust the time you perform your activity. Daily routines are often changed by caregiving needs. It may be time to select a new time and day to do your favorite activity.
• Adjust the location of your activity. Before you give up your lunch with friends, think about having your friends bring lunch to your home. If possible, arrange to have someone sit with your friend or family member while you receive the support you need to continue caring.
• Adjust length of your activity. A quick walk around the block will never replace the long walks you once enjoyed. However, that quick walk can help you meet your caregiving challenges.
• Keep Familiar Activities. This may not be the best time in your life to learn a new self-care activity. Think about things you did in the past that you enjoyed and do those things.
• Keep Your Commitment to Yourself. Plan to take care of yourself. Make the necessary arrangements needed or plan the activity at a convenient time.
• Keep it Real. There may be several activities that will never work in your caregiving situation. Plan activities that will work for you.
• Keep it Simple. The more complex the activity, the less achievable it may be. Below you will find a list of simple activities that other caregivers have found helpful. Many can be performed alone or shared with the friend or family member you are caring for.
• Create your Sacred Space: This could be a room, a table of things or a chair near a window. Create your space.

Caregiving can be very demanding at times. But caring for a friend or family member can also be one of life’s most rewarding experiences. Time is needed to experience the reward and prepare to care again.

A wise person once said, “you can’t draw water from a empty well.” This saying is true when applied to caregiving. Self-care does not take a lot of time, nor does it have to be time away from your family or loved one. Self-care does take a commitment and an understanding that our bodies, like wells, need to be replenished in order to keep giving. Take time to keep your well filled.

See the following links for further information on caring for yourself in your role as a caregiver:

• Caring for the caregiver: Module 9 of this online course.
• Self-Nurturing Activities

The death of a loved one is a very difficult experience. Yet during this period of grief and emotional readjustments, you may be called upon to make many important decisions. There are many papers you will need, and steps that must be taken. Here`s a list of the basic actions you will need to take after the death of your loved one.

Calls to make:

• Contact the coroner or justice of the peace through the local police if your care receiver has died at home, so that he/she may “pronounce” death.
• Funeral home.
• Minister, priest, rabbi, or other spiritual advisor.
• Insurance agents.
• Unions and fraternal organizations.
• Attorney (if applicable).
• Accountant.
• Executor of the estate.
• Government offices, including Social Security (1-800-772-1213) and Internal Revenue Service (1-800-829-1040).
• Veterans Administration (1-800-827-1000).
• Bank, investment companies, mortgage companies.
• Contact an attorney to inquire about changing the title on all real estate property. If applicable, application for widowed person exemption as well as homestead and disability exemptions may be completed.

Collect the necessary papers:
Before you can file for various benefits and take care of other financial matters, you will need to collect a variety of documents.

• Contact insurance companies.
  In addition to life insurance, check to see if other forms of insurance covered the deceased. Some loans, mortgages, and credit card accounts are covered by credit life insurance, which pays off account balances. Contact each insurance company about how to claim the policy benefits.

If you can`t find the individual policies among the deceased`s papers, check the checkbook or paycheck stubs for premiums paid. Generally, life insurance proceeds are paid directly to the named beneficiary. Most companies offer to pay the benefits in a lump sum or as fixed payments over time.

• Notify Social Security.
  You will need to notify the Social Security Administration if the deceased was already receiving Social Security. When applying for survivor`s benefits, you will need to have birth, death, and marriage certificates, Social Security numbers, and a copy of the deceased`s most recent federal income tax return.

Claim benefits.
Veterans, Social Security, and employee benefits may be available. Unions and other professional organizations provide benefits as well.

• Begin probate.
  Probate is the court-supervised process of paying the deceased`s debts and distributing the estate to the rightful beneficiaries. Jointly owned property, property in trust, and assets with a designated beneficiary (life insurance, 401(k), pensions) do not go through the probate process.

If the deceased did not have a will, state law will determine how the deceased`s assets and property will be distributed to family members. The court will appoint a personal representative or the person named in the will as executor to manage the deceased`s affairs. Contact the probate court in the state where the deceased lived for details.