The History of TSE (Prion Diseases)
Caring for a loved one with CJD
Getting tested for the CJD Mutation
Current Research
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
With advance care planning, “Clinical care is shaped by a patient’s preferences when the patient is unable to participate in decision making” (Teno 1994). A written and legal document called an advance directive (either a living will or durable power of attorney) is one outcome of good advance care planning. Patients have the right to accept or reject medical treatments including withdrawing or withholding life support. Good advance care planning should result in patients understanding their prognoses and likely outcomes of care, and be provided with the opportunity to reflect and formulate on important goals and plans.
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
Making a will is a valuable spiritual exercise as well as a highly practical and normalizing procedure. Some of us avoid doing this because it is an admission that we are going to die. Not having a will can lead to unnecessary financial hardship for many families. If you die without a will, the courts dictate who receives your estate (the total of your house and its contents, car, various insurance policies and savings accounts may well come to more than you realize). The courts will also decide who should manage the affairs of your estate, and who will be your legal representatives (and what their costs may be). It is important to realize that unmarried partners may have no claim on the estate (unless ‘dependant’, but this could be expensive to establish). Even a legal wife or husband may have to sell the home to pay the other automatic beneficiaries. Of particular importance in the case of divorced or separated parents, the rules will determine who the legal guardians of your children will be; with a will you can name the person you would like to act as your children’s guardian. The standard way to get a will drawn up is to consult a lawyer. There are steps you should take before meeting with a lawyer (this may save you time and money):
1. List all the items you have to leave – house and contents, car, savings
accounts, etc. and their rough value.
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
If your loved one is admitted to a hospital or extended care facility, the staff will try to help all patients whose hearts have stopped or who have stopped breathing. You can indicate with an advance directive form or by talking with your doctor that you don’t want to have cardiopulmonary resuscitation (CPR) if your heart stops or if you stop breathing. In this case, your doctor puts a do-not-resuscitate (DNR) order in your medical chart. DNR orders can be established prior to being hospitalized. Discuss your wishes about CPR with your doctor, either in the office or when admitted to the hospital. Doctors and hospitals in all states accept DNR 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
Individuals with CJD or who tested positive for a CJD mutation should not donate any organs. CJD has been transmitted from corneal and dura mater grafts and there is a possibility that other organs could also transmit the disease. In the event an individual dies from CJD, the brain can be donated for research purposes. To obtain information regarding organ donation for research purposes, contact one of the following:
Dr. Pierre-Luigi Gambetti
Cleveland, Ohio
[email protected]
or
Dr. Paul Brown
[email protected]
AUTOPSY
Performing an autopsy is the only definitive way of diagnosing CJD at this time. As with all end of life issues, this is a very personal decision. Due to the fear surrounding the infectivity of CJD, some coroners will not perform autopsies on individuals suspected or diagnosed with CJD. If you have difficulty getting someone to perform an autopsy and your wish is to have an autopsy done, there are options available to you. Contact one of the following:
Dr. Pierre-Luigi Gambetti
Cleveland, Ohio
[email protected]
or
Dr. Paul Brown
[email protected]
EMBALMING
Due to the fear surrounding infectivity of CJD, some funeral home directors refuse to embalm individuals suspected or diagnosed with CJD. Information is available to funeral home directors:
Creutzfeldt-Jakob Disease and
the Mortuary Profession
by Dr. Paul Brown and George Lamb
Published in the March 2000 issue of The Director (page 58)
and
Creutzfeldt-Jakob Disease
A Practical Guide for the Embalmer
Document provided by the:
New Jersey Funeral Service Education Corporation
P.O. Box L
Manasquan, New Jersey 08736
800-734-3712 (outside NJ 732-974-9444)
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