Aug 06, 2009 12:56 AM
ARE YOU PREPARED?
(Series of articles will be written on this topic. The first in this series is an overview and will elaborate the preparedness for the golden years –end of life- years.)
Having read the title, your first question may be “Prepared for what?” When we, the Indian community, first arrived in this country, we were young and robust and long-term planning was not our priority. Like most young people, we thought we would never get critically ill; indeed, we thought we would never die. Our finances were simple and our estates were meager. We were busy adjusting to the cultural shock, working overtime and raising young children. Our record keeping was often rudimentary at best.
Little did we realize that quickly--within ten or twenty years--our finances would become more complex. Now, many of us are faced with some or all of the following facts: Our families are grown; some of us are experiencing health, emotional and relationship problems. Our estates have grown and we are beginning to deal with deaths in our families and among close friends. We need to take a deep breath, sit down with our families and ask a question – ARE WE PREPARED?
In order to be prepared, we need to be proactive and in planning for the future. We will call our plan APAD (Awareness, Preparedness, Action, Debriefing).
In order to be properly prepared, we need to be aware of the conditions we will or may face and after preparing, we need to act or have a plan of action before suddenly being faced with those situations. Finally, it is always helpful to engage in a debriefing session, including all involved parties, to evaluate how we have performed and how we can improve our efforts toward preparedness in the future. In our day-to-day lives, we should be constantly preparing for a variety of situations, some of which are mundane and routine and others that are more complicated and require more attention.
• We need to be prepared to maintain sound physical, emotional and spiritual health and to maintain good relationships with family and friends.
• In certain situations, planning is required to pay for higher education, preparing for a career, budgeting, financial planning, estate planning and so forth.
• We need to be prepared for natural disasters such as hurricanes, tornados, earthquakes and floods; we should also be prepared for other types of deadly or life-changing events such as plane crashes, chemical or nuclear contamination and terrorists’ attacks. And, we must consider the possibility of disease epidemics or pandemics such as avian flu, malaria and HIV infections.
• Preparedness also includes taking time too attend to legal documents such as designating someone as having power of attorney for financial and estate planning issues. (This is different than a healthcare power of attorney.)
• Finally, we must face our own mortality and make our inevitable demise easier for those we leave behind. This includes keeping proper records of important documents, completing a living will, appointing a health care power of attorney and having “caring conversations” with our loved ones about end-of-life issues.
PREPARING FOR THE GOLDEN YEARS
All of us, regardless of age, may be faced with critical illness or death. Several of us are “Care Givers” for our elderly parents, other family members and sometimes close friends and we are often called upon to make informed end of life decisions for them. As we age, we no longer think in terms of “if” we will face illness or death, but “when.” In any case, all of us need to plan ahead and be prepared by improving and organizing the way we maintain important records.
RECORD KEEPING
We all understand the importance of keeping proper records and maintaining important documents so that they are easily available to family members. However, when it comes to actually paying the required attention to such details, we often procrastinate. One reason for this may be that it is difficult for most of us to imagine a scenario in which our lives will end. This sort of denial may mean that our loved ones might suddenly be faced with sorting out financial and estate matters when they are emotionally distressed and cannot think clearly. In some cases, spouses are ignorant of family finances and even more uninformed about business finances. Record keeping is ideally organized by placing records in related groups such as those suggested here.
• Family Identity Documents: birth certificates, marriage certificates, citizenship papers, social security cards, passports and graduation certificates or diplomas.
• Financial Information: contact information for credit cards, bank accounts, including business and brokerage accounts; insurance policies including property, health and life insurance; records of real estate owned personally or in partnership with others and including title, deed of trust and guaranty deed; financial and estate planning documents; bank safe deposit box location and keys; and location of home safes and their combinations.
• Medical Records: These records are very important. Though your physician and hospitals maintain records--some in electronic form, it is wise to obtain some medical records and keep them in your possession. Included are medical histories, records of physical exams, hospital discharge summaries, procedure or operation notes for each admission to the hospital, names and contact information for all physicians and hospitals, a list of all medications and allergies and a recent EKG tracing.
• Documents Pertaining to End-of-Life Issues: Examples of these documents include living wills and healthcare powers of attorney. Ideally, every person, even a young adult, should have a living will as critical illness and death can occur at any age. However, it is not possible to express in detail your wishes about the care you would like to receive at the end-of-life in the documents presently available. Thus several authors have come up with a series of questions which go into detail about your wishes and desires.
• Contact information: Your loved ones need to have names and contact information for your accountant, bankers, insurance agent, brokers, estate and financial planner and close friends.
Originals of all important records and documents are ideally kept in safe deposit box at the bank. If kept at home, they should be stored in a fire-proof safe. If you own a good quality scanner or have access to one, you can scan all documents, including credit cards, social security cards and passports. A good quality digital camera also works well to photograph documents. These documents can then be transferred to your computer and electronic copies can be made and provided to your loved ones.
THE LIVING WILL AND DURABLE POWER OF ATTORNEY
The documents needed to prepare a “Living Will” and a “Durable Power Of Attorney for Health Care” are available through local hospitals, AARP and other organizations. According to Tennessee law, these completed documents must be witnessed by two people, one of whom is not a relative. You can have them notarized by a notary public, but no law requires this. Basically, a living will is a paper that says you want to die a natural death. It is a good document and all of us should have one. However there are several details and clarifications that are not covered in a living will and putting them down in writing will help family members better understand and fulfill your specific wishes. Doing this is a great gift to your loved ones. Many times we hear people saying that they don’t want to be kept alive on a ventilator. It is not that simple and several questions, sometimes very complex and confusing, come up. Family members are often asked to make decisions on behalf of a loved one who is seriously ill without having a complete understanding of his or her preferences. Several articles are available which go into detail and are helpful in understanding the wishes of loved ones beyond the living will. Some of the articles are listed here.
1. “Caring Conversations” by The Center for Practical Bioethics. http://www.practicalbioethics.org Tel. 816-221-1100.
2. “Put It in Writing” by The American Hospital Association. Www.aha.org
3. “Family Conversation That Help Parents Stay Independent” by AARP. http://www.aarp.org/programs.
4. “Signing the Five Wishes Form” published by Aging with Dignity. “Improving Care For The End of Life” by Joanne Lynn, Janice Schuster and Andrea Kabcenell. Oxford University Press.
Let’s not forget the APAD scenario!
Following are some terms that need to be defined and understood:
• Advance Directives, also known as Advance Care Plans, are composed of two parts: a description of the medical treatment you want when you are facing serious illness and also the appointment of an agent to make health care decisions for you when you are unable to make them for yourself. A health care treatment directive is similar to a living will; however, it is more comprehensive and becomes effective whenever you lose the ability to make decisions, whereas a living will applies only when you are terminally ill. A health care treatment directive is a very important part of planning. It helps in expressing our wishes ahead of time in writing and it gives us an opportunity to direct certain aspect of our care based on our particular values and priorities. It protects and helps our loved ones from making troubling decisions. It should be more specific and detailed than just “do not resuscitate” or “do not place on ventilator”.
• Appointing someone as the holder of a “Durable Power of Attorney for Healthcare” (this is different than power of attorney for financial issues), also known as your “proxy” or “agent” is an essential part of the process. This person makes healthcare decisions for you when you cannot make them for yourself. Typically this person is close to you (though he or she does not have to be a relative) and you have had a chance to discuss your views and wishes several times on this topic. These two important legal documents need to be dated and signed by appropriate witnesses and be easily available to your physician, healthcare facility and loved ones.
• Surrogate: A surrogate is an agent who acts on behalf of a person who lacks capacity to make decisions. An appropriate surrogate may me (1) identified by the patient in advanced directives (living will and healthcare power of attorney), (2) appointed by the court (e.g., a guardian), or (3) the adult who is most involved with the patient and most knowledgeable about the patient’s personal values and preferences.
• Conservator or Guardian: This is a person appointed by the court to take charge of an incapacitated person’s legal, financial and personal affairs. There are two types of conservators, the conservator of the estate who handles financial and legal matters and conservator of the person who takes care of medical issues, food, clothing and residence.
• Withholding or refusing “Life-Support Treatment” or “Life-Sustaining Treatment”or “Life-prolonging Treatment”: These terms refer to any procedure, device, or medications used to keep a patient alive. This includes the use of ventilators to help the patient breath artificially, administering food and water by artificial means such as tube feeding, cardio-pulmonary resuscitation (CPR), major surgery, blood transfusion, dialysis and antibiotics. The patient has the option of refusing all of the above life-support treatments or refusing one or several of the treatments according to his or her wishes.
• Withdrawing Life-Support Treatment (“pulling the plug”): This is a situation in which the healthcare providers have already started life-support treatment and have usually placed the patient on a ventilator. Due to the hopelessness of the situation and poor prognosis, loved ones decide to stop artificial breathing and pull the breathing tube (endotracheal tube) out.
• Cardio-pulmonary resuscitation (CPR): CPR has two parts. Basic Life Support (BLS) is administered when the heart stops pumping and/or lungs stop breathing and involves mouth-to-mouth breathing and external cardiac massage. It is usually done at the site in emergency situations with minimal or no special equipment or devices available and can be done by non-medical people. Advanced Cardiac Life Support (ACLS) involves the use of more sophisticated devices and equipment like defibrillators, ventilators and medications. Healthcare providers usually administer ACLS. Recently introduced Automatic External Defibrillators (AED) are user friendly and can be used by lay people with very minimal training.
• Do Not Resuscitate (DNR ): This is an order dictating that an individual does not desire resuscitative measures in the case of failed breathing or cardiac arrest. This helps healthcare providers to honor patients’ treatment wishes. During admission to a hospital or nursing home, physicians will review this document with the patient and his or her family. It will then be placed in front of the medical chart where it is easily accessible to all providers. This form contains specific orders on whether a patient wants to be resuscitated and lists any limits on medical interventions to be used.
• Capacity means a patient’s ability to understand the significant benefits, risks and alternatives to proposed health care and to make and communicate a health care decision. The determination of the capacity is made by the designated physician.
• Physician Orders for Scope of Treatment (POST) is a standardized form containing orders by a physician who has personally discussed the preferences with the patient for the end-of-life care. POST addresses more than just DNR. It addresses comfort level, IVs/Nutrition and antibiotics and documents that the patient was involved in the discussion. It includes the signature of the patient, guardian or healthcare agent.
• Dementia is a loss of brain function and is not a single disease. Instead, dementia refers to a group of diseases that involves memory, emotional behavior, cognitive skills (such as calculations, abstract thinking or judgment) and communicating problems. In the majority of cases, these problems are progressive and are irreversible. The two main causes of degenerative (irreversible) dementia are Alzheimer’s disease and vascular dementia (loss of brain function due to a series of small strokes).
• Comatose Condition: Coma means deep sleep. It is a state of extreme unconsciousness in which the individual exhibits no voluntary movement or behavior. In deep coma, a person does not respond to painful stimuli. There are numerous causes of coma –almost 34 according to some authors. Causes of coma may include adverse reaction to or overdose of some medications, electrolyte imbalance, vitamin deficiency, head injury, cardiogenic shock, etc. Some of these conditions are reversible and the person recovers completely, whereas some are irreversible and there is less chance of complete recovery. As it stands today, there is no definite test that can tell us for sure who will recover and who will not. The cause of coma, the passage of time and the opinion of the physicians involved are helpful in making a decision about continuing or withdrawing life-sustaining treatment.
• Persistent Vegetative State: As defined by the American Academy of Neurology, this is “a form of eyes-open, permanent unconsciousness in which patients have periods of wakefulness and physiologic sleep/wake cycles but at no time is aware of themselves or their environment.”
• Brain death is the irreversible end of all brain activity, including all involuntary activity necessary to sustain life, due to total necrosis of brain neurons following loss of blood flow and lack of oxygenation. There is no spontaneous breathing, there is no response to painful stimuli, there is an absence of pupillary response (fixed pupils) and absence of corneal reflex. Brain electrical activity ceases and there is flat EEG (electro encephalogram). Nuclear medicine head scan shows complete absence of blood flow to the brain.
• Futile refers to a treatment determined on the basis of current medical knowledge and experience to hold no reasonable promise for contributing to the patient’s well-being or of achieving agreed-on goals of care.
• End-stage condition means a irreversible condition that is caused by injury, disease or illness that has resulted in progressively severe and permanent deterioration. And which, to a reasonable degree of medical probability the treatment of the condition would be ineffective.
• Terminal Condition is defined as a status that is incurable or irreversible and in which death will occur within a short period. There is no precise, universally accepted definition of “a short period,” but in general is considered to be less than six months.
• Euthanasia refers to a practice of ending a life in a painless manner. Since 1997, Oregon is the only state in USA that has allowed people who are terminally ill and in intractable pain to obtain a lethal prescription from their physician and end their chronic suffering. This is called “Physician Assisted Suicide” or PAS.
• Palliative Care is medical intervention intended to alleviate suffering, discomfort and dysfunction but not to cure (such as medication for pain, anxiety, depression, or treatment with antibiotics for annoying infections).
• Hospice Care is a program that provides care of the terminally ill in the form of pain relief, counseling and custodial care, either at home or in a facility.
Performing Last Rites for Hindus in USA.
Hindus residing in USA face a unique challenge when it comes to performing the last rites. Though there are several Hindu Temples in USA, they do not get involved in the details of the Funeral arrangements like the Christian Churches. Details of the arrangements are left up to the family and friends who are not necessarily experienced in performing the last rites. Needless to say sometimes the arrangement is haphazard and unpleasant for one of the most important and emotional milestone in our life. There are numerous details one has to address after death of our loved ones and that too at a time when we are emotionally distressed. It would be helpful if we can streamline the process and make it easy for all concerned. Community Affairs Committee of Sri Ganesha Temple, Nashville several years ago had written some basic guidelines on “End of Life Issues and Performing Last Rites” and was available on the Temple web site. Jain community in USA has published “Jain Funeral Practices and Observances, Practical Guidelines” Complied and Edited by Dr. Tansukh Salgia. Some of the community members have expressed interest in giving their input and helping in compiling detailed guidelines for this important event in our life. If you wish to give any input on this topic or if you wish to participate as a committee member please send an e-mail to Pwasudev@aol.com.
Several different formats of the Advance Care Plan (living will and healthcare power of attorney) are available. One published by the State of Tennessee is user friendly and a copy of the form [Advance Care Plan] can be downloaded from http://www.endoflifecaretn.org.
Dr. Pramod Wasudev
