Hospice Miramichi: We always seem to be waiting for something. . We put up with our jobs because we are waiting for our vacation. We spend the majority of our time alone because we are waiting for that perfect person to share our life with. We wait to save enough money to take that trip of a lifetime. We spend so much time waiting and planning for future events that we forget to live in the moment.
To those individuals living with an end stage disease, waiting takes on a whole new meaning. In his book “What Dying People Want” Dr. David Kuhl states that individuals living with a terminal illness experience excessive periods of waiting during the course of their illness. From waiting to see the family doctor to discuss the worrisome symptom that has prompted the request for the initial appointment in the first place , the individual will wait to see the specialist, wait for tests, wait for results, wait for treatments, wait for services ,wait for the disease to progress and finally wait to die. These individuals and their families don’t plan for future events, they live in the now.
If you are dying, waiting can fill your life with uncertainty, fear of the unknown and loss of control which may result in feelings of anxiety. However, anxiety may be reduced if you become an active participant in determining what your future health care will look like.
Making decisions for your health care in advance is called an advance care directive or, a living will. In the province of New Brunswick a living will is not considered to be a legal document however, it would be a very strong indication of treatments you would or would not want to receive. An advance care directive in the province of NB is called a power of attorney for personal care.
The power of attorney for personal care is a legal document and requires a lawyer to complete. You choose a person in advance, who would be able to make personal care decisions on your behalf, if, you were unable to make these decisions on your own. The person you choose is called a substitute, surrogate or alternate decision maker. The substitute decision maker has the right to make decisions regarding your health care, consent to medical treatment, nutrition, shelter, clothing and personal safety. The substitute decision maker can be the same person that you have chosen for your power of attorney for property and financial affairs or it can be someone completely different. The person you choose has to be a mentally competent individual over the age of 19. This person does not have to be a member of your family or your next of kin, but has to be aware of your health care choices and be able to acknowledge these choices during the times that you are not able to speak for yourself.
Many of us assume that a power of attorney for personal care is something that older adults with life threatening illnesses need to look into. The reality is that most of us will die after experiencing a chronic life threatening illness. With advancements in medical technology, patients who in the past had little or no chance of recovery can be kept alive indefinitely. In order for your substitute decision maker to represent your best interests, you need to let the people closest to you know how bad the situation would have to become in order for you to say “Don’t keep me alive in that condition.” Consider what makes life meaningful for you. What are your values and beliefs? Now think about what would have to happen in order for your quality of life to become affected. Would you want to be kept alive if there was no hope for recovery or return of abilities such as speech, walking, or thinking? Would you want to be resuscitated if your heart should stop beating, or put on a ventilator if you were unable to breathe on your own? Would you want to depend on tube feedings to provide your nutritional needs if you were unable to eat or would you want to be kept as comfortable as possible with medications to control your pain and other unpleasant symptoms, thereby allowing for a natural death? Only you can make these decisions and in doing so you would spare your family the stress of having to decide for you in the case of an emergency.
No one knows what the future holds in store. By planning for uncertainty you are providing your loved ones with a gift. Refusing to accept certain treatments that go against your core values and beliefs does not mean that you have given up and are ready to die. It does not mean that you will not be offered medical treatment if you should develop a treatable illness, that you would be ignored if you were admitted to a hospital or that your pain and symptom control measures will stop. What it does mean however is that you have taken back control over how you will live until you die. After all it is your life. You decide.
Connie Doucet,RN,CHPCN(C) is a member of the Board of Directors of Hospice Miramichi, a non profit organization established in March 2011. Incorporated in July, Hospice Miramichi hopes to provide emotional and support services to those living with and dying from end stage diseases where cure is not an option and medications are no longer effective in controlling the disease. For further information and to find out how you can support Hospice Miramichi contact Connie at 773-6951.