The following are articles that we think may be helpful to you from the National Hospice Foundation’s Caring Connections website www.CaringInfo.org
Living with an Illness
Living with a serious illness can impact every part of your life. You may experience new emotions or have spiritual questions; you may notice physical changes. Remember that information and support is available to you. In this section you will learn about what changes you may experience, how to support yourself and hear that any changes or reactions you experience are real and valid.
Spiritual Questions
There are certain questions that are regularly asked at Hospice of Santa Barbara that simply do not have concrete answers. These questions usually begin with, "Why?" "Why me?" "Why her?" "Why us?" "Why now?" Click Here for an article about these questions written by Clay Napier, Chaplain at Hospice of Santa Barbara, Inc.
Pain Management
Hospice of Santa Barbara is a non-medical hospice and provides human support for emotional, social and spiritual pain. For help managing physical pain, please contact your physician or VNHC.
Practical Considerations
Illness can impact many aspects of your life including your work life, finances, social life and your plans for the future. Planning ahead can help to ensure that you aren’t making decisions during a time of crisis. Advance care planning is a process that helps you think about health care decisions. In addition you may want to consider:
- Making an appointment with an attorney to make or update your will and/or draw up a durable power of attorney for financial decisions
- Reviewing your health insurance so that you know what will be covered as you make future healthcare decisions
- Updating your life insurance policy as needed
- Ensuring that your loved ones and physicians have copies of your advance directives
- Writing down your financial information including bank name, account numbers and locations of safe deposit keys
- Talking with your employer about your current health status and whether or not you plan to return to work (your employer should provide you with information about Disability and other benefits)
Facing a serious illness can bring challenges and tough decisions. Here are some ways you can support yourself during this time:
- Look at the ways that you have coped successfully with difficulty in the past
- Think about what you want, and what you don’t want, during end-of-life treatment
- Examine your priorities and values, and share them with those you love
- Communicate with loved ones, you may want to reconcile old disagreements or concerns
- Take tangible steps, such as establishing advance directives to ensure that your wishes are followed and your family is supported.
Advance Directives
DOWNLOAD CALIFORNIA STATE ADVANCE DIRECTIVES
The term advance directive describes two types of legal documents that enable you to plan for and communicate your end-of-life wishes in the event that you are unable to communicate, a living will and medical power of attorney. This section will describe advance directives, choosing and being a healthcare agent and preparing your advance directives. HSB Case Management
What are Advance Directives?
A living will allows you to document your wishes concerning medical treatments at the end of life.
Before your living will can guide medical decision-making two physicians must certify:
- You are unable to make medical decisions,
- You are in the medical condition specified in the state's living will law (such as "terminal illness" or "permanent unconsciousness"),
- Other requirements also may apply, depending upon the state.
A medical power of attorney (or healthcare proxy) allows you to appoint a person you trust as your healthcare agent (or surrogate decision maker), who is authorized to make medical decisions on your behalf.
Before a medical power of attorney goes into effect a person’s physician must conclude that they are unable to make their own medical decisions. In addition:
- If a person regains the ability to make decisions, the agent cannot continue to act on the person's behalf.
- Many states have additional requirements that apply only to decisions about life-sustaining medical treatments.
- For example, before your agent can refuse a life-sustaining treatment on your behalf, a second physician may have to confirm your doctor's assessment that you are incapable of making treatment decisions.
What Else Do I Need to Know?
- Advance directives are legally valid throughout the United States. While you do not need a lawyer to fill out an advance directive, your advance directive becomes legally valid as soon as you sign them in front of the required witnesses. The laws governing advance directives vary from state to state, so it is important to complete and sign advance directives that comply with your state's law. Also, advance directives can have different titles in different states.
- Emergency medical technicians cannot honor living wills or medical powers of attorney. Once emergency personnel have been called, they must do what is necessary to stabilize a person for transfer to a hospital, both from accident sites and from a home or other facility. After a physician fully evaluates the person's condition and determines the underlying conditions, advance directives can be implemented.
- One state’s advance directive does not always work in another state. Some states do honor advance directives from another state; others will honor out-of-state advance directives as long as they are similar to the state's own law; and some states do not have an answer to this question. The best solution is if you spend a significant amount of time in more than one state, you should complete the advance directives for all the states you spend a significant amount of time in.
- Advance directives do not expire. An advance directive remains in effect until you change it. If you complete a new advance directive, it invalidates the previous one.
- You should review your advance directives periodically to ensure that they still reflect your wishes. If you want to change anything in an advance directive once you have completed it, you should complete a whole new document. HSB Case Management
Healthcare Agents: Choosing One and Being One
Healthcare Agents: Choosing One
A healthcare agent is someone you designate to make medical decisions for you if, at some future time, you are unable to make decision’s yourself. Your agent can be a close relative or a personal friend, but should be someone who knows you well and whom you trust. Your healthcare agent should be a person who knows your wishes about medical treatment and who is willing to take responsibility to ensure your wishes are followed. In most states, your agent can make decisions any time you lose the ability to make a medical decision, not just decisions about the end of life.
Ideally, your agent should be someone who is not afraid to ask questions of the healthcare professionals in order to get information needed to make decisions. Your agent may need to be assertive to ensure that your wishes are respected. Your agent will need to know as much as possible about your wishes and values regarding the use of medical technology. Not everyone is comfortable accepting this sort of responsibility; therefore, it is very important to have an honest discussion with the person you plan to appoint before you make the appointment.
Selecting an Agent
- Select someone whom you trust and who understands your decisions.
- Because you are asking your agent to accept significant responsibility, be certain to ask your agent if he or she is willing to act on your behalf. Not everyone is able to be an effective agent.
- Talk to your agent about your wishes regarding end-of-life medical treatment. Even family members may not know how much treatment a loved one would be willing to accept near the end of life. Talking clarifies what you want and diminishes an agent's potential guilt and anguish over whether he or she is doing the right thing.
- Prepare and sign the appropriate advance directive forms for your state. Keep the original and give copies to your agent and alternate agents, family and doctors and have it placed in your medical record.
Talk with your healthcare agent about your end-of-life wishes.
Your healthcare agent needs to know about the quality of life that is important to you and when and what medical treatments you would want. Talking to your agent means discussing values and quality-of-life issues as well as treatments and medical situations. Because situations could occur that you might not anticipate, your agent may need to base a decision on what he or she knows about your values and your views of what makes life worth living. These are not simple questions, and your views may change. For this reason, you need to talk to your agent in depth and over time.
The following questions may help you discuss these issues with your healthcare agent:
- Are there treatments you particularly want to receive or refuse?
- What are you afraid might happen if you can't make decisions for yourself?
- Do you have any particular fears or concerns about the medical treatments that you might receive? Under what circumstances?
The following questions may also help you to clarify your wishes to your healthcare agent:
- What are your views about artificial nutrition (food) and hydration (fluid)?
- If your heart stopped, under what circumstances would you want doctors to use CPR to try to resuscitate you?
- Would you want to receive treatments such as mechanical ventilation, antibiotics, or tube feeding for a time, but have them stopped if there were no improvement in your condition?
- Do you want to receive these types of treatment no matter what your medical condition? On a trial basis? Never?
Benefits of Having an Agent
- The agent knows you and understands your wishes about medical treatments. He or she can make decisions in situations you might not have anticipated.
- An agent has flexibility. He or she can talk with your physicians about your changing medical condition and authorize treatment or have it withdrawn as circumstances change.
- If you have prepared a living will, your agent can interpret it in situations that were not foreseen. Be sure to make clear in your living will that your agent should make decisions on how to interpret it or when to apply it.
- Your agent can advocate for you. If healthcare providers resist following your wishes, your agent can negotiate with them and take any other necessary steps to see that your wishes are honored.
Healthcare Agents: Being One
Advocating for your loved one can be a difficult task. You should ensure that you are comfortable taking on this responsibility and have ongoing conversations with your loved ones about their wishes for end-of-life care. One of your most important responsibilities will be to communicate with your loved ones healthcare providers to ensure your loved ones wishes are honored.
How to talk with a doctor if you are a healthcare agent:
- Establish open communication with the doctor.
- Make an appointment to speak about your loved one's care.
Be assertive in expressing your wishes. Clearly state the reasons behind your requests without being hostile.
- Ask questions. To be effective and to make informed decisions, learn as much as possible about your loved one's condition and prognosis.
- Ask about the goals of the treatment plan - often. A physician's definition of recovery can be different from what is acceptable to you or your loved one. Seek the assistance of a social worker or patient representative if necessary. Such professionals can help improve communication between you and the physician.
- Don't be afraid to speak to the facility's administration. If the physician is unresponsive, go directly to his or her superiors, including the chief of medicine, risk manager, hospital lawyer or administrator.
Preparing Your Advance Directives
Before you prepare your advance directives:
- Get information on the types of life-sustaining treatments that are available.
- Decide what types of treatment you would want or would not want.
- Share your end-of-life wishes and preferences with your loved ones.
Preparing your own advance directives:
- You do not need a lawyer to prepare advance directives.
- Make sure you prepare your advance directive to accurately reflect your decisions.
- Complete your state-specific advance directives.
- In most states, you can include special requests in your advance directives such as wishes about organ donation, cremation or burial.
- You also should be sure to make your physician and loved ones aware of your specific requests so appropriate referrals and arrangements can be made.
- Ask someone else to look over the documents for you to be sure that you have filled them out correctly.
- Read all of the instructions carefully to ensure that you have included all of the necessary information and that your documents are witnessed properly.
What to do after your advance directives are signed:
- Make several photocopies of the completed documents.
- Keep the original documents in a safe but easily accessible place, and tell others where you put them; you can note on the photocopies the location where the originals are kept.
- DO NOT KEEP YOUR ADVANCE DIRECTIVES IN A SAFE DEPOSIT BOX. Other people may need access to them.
- Give photocopies to your agent and alternate agent.
- Be sure your doctors have copies of your advance directives and give copies to everyone who might be involved with your healthcare, such as your family, clergy, or friends. Your local hospital might also be willing to file your advance directives in case you are admitted in the future.
Once you have completed your advance directive you need to talk to anyone who might be involved in your healthcare decision making. This includes family members, loved ones and your healthcare providers. You want them to understand how you feel about medical treatment at the end of life. HSB Case Management
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