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The History of TSE (Prion Diseases) Caring for a loved one with CJD Getting tested for the CJD Mutation
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END OF LIFE ISSUES Death
is around us all the time yet we feel that it will never happen to us.
We bury our friends and relatives but think we will live forever.
In a way we recognize it and even plan for it with life insurance
policies, estate planning etc. In
addressing these topics, we seem to feel that it is a recognition of death
and an end point to this life. Where
we fail is in recognizing it as the beginning of another life that will
never end and where we will reap what we sow here.
The
following are other plans that one should consider making in preparation for
the ending of our physical life. It
is not necessary to wait until death is upon you to complete these plans in
fact; it is best to address these topics early. ADVANCE
CARE PLANNING
It
is extremely important that advance care planning decisions are reviewed
with the patient's physician and copies provided to any health care
institution that a patient may be admitted to for care.
Likewise, it is imperative that advance care planning decisions be
shared with the individual's family. Over
the course of an illness, there is usually a transition in the goals of care
from the focus of extending and preserving life to that of maximizing the
patient's comfort. The timing
of this transition, and the degree to which it is based on the informed
preferences of the patient (advance care planning), are important outcome
variables in end of life care for the patient. Laws
about advance directives vary from state to state. Individuals should be aware of the guidelines of their state
laws regarding the scope and technical requirements that apply to advance
directives. Living wills and
durable power of attorneys for health care are legal in most states.
Even if the law in your state does not officially recognize them,
they can still guide your loved ones and doctor if you are unable to make
decisions about your medical care. Definitions 1.
An Advance Directive is a
document in which a person gives advance directions about medical care,
and/or designates who should make medical decisions for the person if he or
she should lose decision-making capacity.
A good advance directive describes the kind of treatment you would
want to receive for different levels of illness.
For example, the directives would describe what kind of care you
would want if you have a critical illness, a terminal illness or permanent
unconsciousness. Advance
Directives usually tell your doctor that you don't want certain kinds of
treatment when you are this ill. However,
they can also indicate that you want a certain treatment, no matter how ill
you are. There are two common types of advance directives: a Living Will and
Durable Power of Attorney for Health Care. 2.
A Living Will is a written
statement prepared by an individual with decision-making capacity directing
what forms of medical treatment the individual wished to receive or forego
should he or she lose decision-making capacity.
A living will only comes into effect when you are terminally ill.
Being terminally ill generally means that you have less than six
months to live. 3.
A Durable Power of Attorney
for Health Care (DPOA-HC) is an individual's written designation of
another person to make decisions about his or her medical treatment if the
individual should lose decision-making capacity. Losing decision-making capacity is indicated when an
individual is unconscious or unable to make medical decisions. MAKING
YOUR WILL 1.
List all the items you have to leave - house and contents, car, savings 2.
Consider whom you would like to provide for and in what way. 3.
Consider whether you would like to leave money or property 'in
trusts' for children or grandchildren until they are grown up and at what
age you think they should inherit your gift. 4.
Decide who you would like to receive your sentimental belongings.
These may be of little financial value but you can pass them on to
someone you know will appreciate them. 5.
Consider whether you would like to leave some money to charity
(bequests to charities are not liable to inheritance tax). 6.
Choose one or more executors to 'handle you affairs'.
The executors can be spouses or members of the family or friends,
although it is as well to get their agreement in advance.
7.
Consider who you would want to be legal guardians to you children. DO-NOT-RESUSCITATE
ORDERS The
above DNR information applies when a patient may be admitted to a hospital
or is already admitted to a hospital. One
other important thing to consider is 'out-of-hospital' DNR orders.
In some states, ambulance personnel are required to resuscitate any
individual under their care during transportation of that individual to the
hospital. Individuals can sign
an agreement with their physician indicating that in the event they are
transported by ambulance to the hospital, ambulance personnel are not to
resuscitate them. If such an
agreement is required in your state, it is important to discuss this with
family and have the document (agreement) easily accessible.
This does vary from state to state, individuals should check with
their doctor, lawyer or state representative about the law in your state. ORGAN
DONATION Dr.
Pierre-Luigi Gambetti or Dr. Paul Brown AUTOPSY Dr.
Pierre-Luigi Gambetti or Dr. Paul Brown EMBALMIN Creutzfeldt-Jakob Disease and by Dr. Paul Brown and George Lamb Published in the March 2000 issue of The Director (page 58) and Creutzfeldt-Jakob
Disease Document provided by the: New
Jersey Funeral Service Education Corporation 800-734-3712
(outside NJ 732-974-9444) |
