Our Final Journey
End Stages of Life
Tools For Viewing
Let's Talk About It
Section 1 - Assistive Technology
Section 2 - Divorce Issues
Section 3 - Drugs/Medications
Section 4 - Checklist, Documents, Forms
Section 5 - Employment Issues
Section 6 - Estate Planning
Advanced Directives & DNR's
Section 7 - Caregiver Resources
Patient Quality of Life: Should Doctors Guess It?
Incontinence Care
Section 8 - Children Seriously Ill
Children of The Chronically Ill
Siblings of Children with Special Health Needs
Guides To Disability Issues
End Stage Hospital & Home Care
Child With A Serious Illness
Individual Family Service Plan (IFSP)
Camps-Special Needs Children
Children's Wish Foundations
Section 9 - For Kids
Section 10 - Family Resources
Section 11 - Patient Resources
Section 12 - Financial Aids
Section 13 - Insurance
Long Term Care Insurance
Section 14 - Legal
Section 15 - Long Term Care
Section 16 - Symptom Support
Section 17 - End of Life
Section 18 - Funeral Planning
Section 19 - After Death Occurs
Hospice FAQS
Symptom Support
Behavoir Strategies
Ill Person's Feelings
Caregiving & Family Harmony
Caregiver Grief ~Article
End of Life
Comforting A Dying Person
End Stages of Life
When Someone Dies
Funeral Planning
Bereavement Fares and Discounts
Common Bonds of Caregiving
Tips For Helping Your Friend
About me
Free Greeting Cards
Estate Planning Definition
Living & Other Trusts
Wills & Beneficiaries
State Laws On Wills
Conservator~Guardianship Definitions
Insurance Issues
Avoiding Probate
Prescription Drug Program I
Prescription Drug Cards II
Disability & SSDI Insurance Questions
Long Term Care Insurance
Employment Issues
Divorce Issues
State Laws-Statutes
Making A Personal File
Emergency Info Form
Emergency Planning
Health Care Surrogate
Forms, Checklist
Family Resources
Patient Resources
Rehab Tools-Assistive Tech. Categories
State Map-Ombudsman Program
NH Your Rights-Fact Sheets
Nursing Homes and Your Rights - Factsheets for some seriously ill or their caregivers.
Long Term Care-Facts & Rights
State & Federal Resources
Drug Resources
Grief & Sorrow
When death nears - Signs and Symptoms
Some Facts About Artificial Nutrition and Hydration
Things To Consider-Artificial Nutrition and Hydration

Final Stages

Although this article was written for AD families, it can also be applicable to any end-of-life care. These are notes from an online interview conducted with Stephanie Zeman, RN MSN
Q. Advanced Stage ...the final phase was only covered by 6 sentences which is just a generality and not meaningful for planning. Any details you might contribute... such as the progression of swallowing difficulties, muscular spasms, decision on nutrition and hydration, infections exposures, immunity system assessment by measurement, immobility and lack of turnover which leads to pressure sores, etc. ? 
The "terminal stage" begins when the person with  can no longer ambulate on their own (barring any complications from falls or other illnesses).  The muscles begin to fail and the immune system becomes compromised. The person can no longer hold their head up and has difficulty maintaining their posture even in a sitting position. 

Once the person becomes "chair bound" and basically immobile, complications    set in. The digestive, circulatory and respiratory tracts do not function well now for a number of reasons including immobility.   This opens the door for infections, strictures, congestive heart failure and bed sores.
Because the person is also losing interest in food and losing weight even if they were able to eat "enough" (they usually develop malabsorbtion syndrome, where the small intestines are no longer able to pull ade-quate nutrition from food) this complicates the situation and increases the physical decline. 
When mobility is lost, the person should have an occupational therapist consult   for positioning aids, and this should be repeated each 6 to 8 weeks as they continue to decline. It is important to  move them around and turn them AT LEAST every 2 hours. The OT may also recommend various protective steps such as the application of "boots" and elbow pads to prevent sores on the bony prominences. 
Eventually swallowing will become a problem. At this point, a speech therapist should be asked to do a swallowing evaluation.  Sometimes positioning can help. If not, Thicket (a product you can get at a pharmacy) is used to thicken all fluids to the consistency of honey. Then they are much easier to swallow. At the same time, foods can be pureed and supplements such as shakes and ensure can also be used. 
Finally, unless feeding tubes are used, the person will start to refuse all food and liquids. While families are horrified to think of their loved one starving to death or dehydrating, studies show us that at this point there is little discomfort to the person who is dying, that is caused by lack of food or water. Their body is shutting down and if we give IV fluids, many will develop congestive heart problems and have more distress because of fluids accumulating in their lungs, so IVs are usually not used. The person will slowly become less and less responsive, breathing will become irregular and stop. The heart will stop soon after. 

There are, however, other reasons to believe that people in the terminal state ARE uncomfortable from joint pain just from being so immobile and possibly any number of other causes depending on what else is going on in their bodies at the time (infection, bed sore, cancer, etc.). Many facilities do not provide pain medication for the late stage  patient because they do not see the usual signs of pain, but there is a pain assessment tool that can be used for the cognitively impaired. It is based on assessing body language (facial expression, grunting or moaning, restlessness etc.).  The tool is a revision of the tool developed by Ladislov Volcier at the Bedford Mass. VA. 
Q Hospice:  To enroll in a Hospice Program one need a doctor's assessment that the patient has only 6 month's to live. How do they do that? A case in local area covered a woman who has been in a hospice for 4 years and at 92 keeps fooling the expert doctors. 

The beginning of the advance stages is     the best time to have a hospice consult.  The support they can give to family and the comfort measures they can provide for the patient are wonderful and should be accessed in time to make a difference. Issues such as feeding tubes, code status and any other arrangements can be discussed at that time with the full support of the hospice team. 

You know that the feeding tube issue is a very personal issue and only you can decide what is right for you and your spouse. The hospice team can help you with details of what can be expected with and without. If the person survives beyond the 6 months, services won't stop unless there is reason to believe they are not really "terminal". 
Q Dying At Home:  From your wide experience....do you have any positive feeling that taking care of a Loved One and letting them die at home is good or does it leave emotional scars that come to haunt the Caregiver? 

When my mom was dying in the hospital of terminal liver cancer, I talked to my dad about bringing her home to die. He was really turned off by the idea saying he could not live in the house if she died there. 

A few years later, I took care of both my father and father-in-law here in my house as each of them, in turn, died from cancer.   I have not had "bad feelings" or emotional scars, but I would not do it again for the simple reason that I paid too heavy a price health-wise and it was too disturbing to my children who were young and mid teens at the time. 

I sat by my father-in-law's bed in a recliner for over a month because he was very confused and wanted to get out of  bed and kept trying, but was too weak. He was anoxic from lack of oxygen due to cancer of the lungs. He would get very agitated and try to climb out. I could not leave him alone for a minute and toward the end, my husband or son also slept on a mattress in the room to help me at night when he became most agitated. Hospice was a wonderful resource and in the last few days my father-in-law was able to tolerate a hospice nurse taking care of him instead of me. 

In retrospect it was too much.  I would have either had the nurses sooner and medicated him more so he would have accepted them, or put him in a facility for the last few weeks of his life. However, in all honesty, I could not do that to my husband if he ever became terminally ill.    I guess it's all in the way you look at it. What is important to you and what are you willing to give up. It WILL take some toll if you do it because it is with you 24 hours a day. If your LO (loved one) is in a nursing home, at least you can get some rest. ~
Written by Stephanie Zeman RN MSN
Geriatric Nurse Consultant
Editor/Publisher ACCESS
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