A. For Patients
i. How to Talk to your Doctor
It’s in our nature to avoid talking about end of life issues. Because of this, many people avoid speaking to their doctors about what type of end of life care we would want. But as hard as it may seem to be, speaking with your doctor about your end-of-life care is critical in ensuring your wishes are met. Many studies have shown that a lack of communication with doctors causes confusion about medical treatments, conditions, and choices that need to be made.
According to research, as many as three-quarters of physicians whose patients had advance directives were unaware that those documents existed. Only 12% of patients with advance directives had received input from their doctor.
Studies show that those who had conversations with their doctors about advanced care planning had increased satisfaction. Patients who talked with their families or physicians about their preferences for end-of-life care:
· had less fear and anxiety
· felt they had more ability to influence and direct their medical care
· believed that their physicians had a better understanding of their wishes
· indicated a greater understanding and comfort level than they had before the discussion
Chances are your doctor is waiting for you to start the conversation and would encourage talking with you about your wishes. Here are some things to consider when talking to your doctor:
· Let your doctor know that you are completing advance directives.
· Ask them to explain any treatment options and procedures you find confusing.
· Talk about pain control and symptom management options and let them know your preference between relief of pain or alertness. Ask if they would be supportive in letting you determine when and how much pain medicine or sedation is enough, on an ongoing basis.
· Share your thoughts about quality of life and what in life is important to you; if you choose quality over quantity of life, let them know.
· Make sure your doctor is willing to follow your directives. The law does not force physicians to follow directives if they disagree with your wishes for moral or ethical reasons.
· Give your doctor a copy of your completed directives. Make sure your doctor knows the name and telephone number of your appointed health care agent.
· Ask if he or she will honor the same request from your healthcare agent or your family if you become incapable of making decisions
It is important that you let your doctor know that you want them to be forthcoming about your illness and your prognosis. Some doctors may be reluctant about letting a patient know they are dying, especially when no one raises the issue. Speak with them about the role you hope they will continue to play and how they can best help you and your family:
· Will you talk candidly with me and my family about my illness?
· Can you give us a heads up on what decisions my family and I have to make?
· What will you do if I have a lot of pain or other uncomfortable symptoms?
· Will you be open about my prognosis and let me know if my treatments stop working so my family and I can make appropriate decisions?
· Will you support my decision to choose hospice and help me get hospice care?
· Will you remain part of my hospice care team and be available to me when I’m close to the end of my life?
All of us want to die peacefully but we cannot go through nor do it alone. If you want some control over your final days, it is important that you speak to your family and your doctors and make your goals and wishes known. Become your own advocate and begin these conversations early on.
ii. Speaking to Others About My Wishes
Speaking with your loved ones about your end of life wishes takes time, thought and other considerations. From their perspective, it will be about losing you, about knowing that one day you will no longer be with them. But realize that by having this discussion you are doing what’s best for you and your loved ones. You are not only ensuring your wishes will be carried out but you are removing future burden from them. You will be giving them peace of mind for the future by allowing them to take ease in knowing they fulfilled your wishes.
Here are a few tips to help make the end of life conversation a bit easier:
Think about what you want. Begin by really thinking about what you want. It may help to consider your values, beliefs and views about what matters in life. This will help you suggest specifics to your loved one and be able to answer their questions and concerns. Think about: how physically independent you want to be; what level of comfort you may want (full comfort which may mean no consciousness or consciousness which may mean some sacrifice of comfort); what would you want from your loved one, lots of attention or to be given a wide berth.
Choose the right moment. Pick a time when your loved one has time to talk. Often daily activities can provide a good opening to end of life conversations like a weekend drive, or a movie about a similar subject.
Give a reason. It could help your loved ones understand by telling them why you have decided to talk about this now.
Your loved ones will have an easier time understanding your choices if you begin by sharing your personal thoughts, values and concerns. This will allow them to understand that these are your own personal choices and help them understand what is behind those choices. For instance, talk about what in life holds the most meaning for you; what makes it worth living; how you feel about death.
It can be multiple conversations. Some family members may be very open to talking about your wishes and even be waiting for you to start the conversation. Others may be more reluctant and less at ease talking to you about end of life care. It may take more than one conversation to express your wishes.
iii. Planning Ahead
What are Advance Directives?
Think of Advance Directives as life on your terms. They are a way of making your voice heard when you can no longer speak. With Advance Directives you can express how much care you do and do not want towards the end of life. It also allows you to name someone to make judgments about your medical treatment if you are unable to make these decisions or choices yourself. Advance directives generally fall into three categories: health care proxy, durable power of attorney, and living will.
Legal forms for advanced directives are available at your doctor’s office, hospital, health department and your state’s department on aging. All 50 states and the District of Columbia have laws regarding advance directives. Documents must comply with the laws in your state. A list of the individual state legal requirements for advanced directives is available at http://www.caringinfo.org/i4a/pages/index.cfm?pageid=3289. Once you make your decisions, it is important that you sign and notarize all appropriate documents and provide copies to your family, caregivers, and health care providers.
You can change or cancel advanced directives at any time provided you are considered competent and able to clearly indicate your wishes ('of sound mind'), and state laws are followed. These changes or cancellations should also be signed and notarized, and copies given to your family and health care providers to ensure they’re aware of the changes.
Preparing for the end of life is often uncomfortable for most people. However, planning ahead can decrease stress and tension for yourself and your loved ones. By completing advance directives, you can predetermine end-of-life decisions in a legally sound way.
What is Health Care Proxy?
Health Care Proxy (also known as designation of a health care surrogate) is a legal document allowing you to select any person you choose to make medical judgment calls for you if you should become temporarily or permanently incapable to make said decisions for yourself. Your health care proxy/surrogate has, in essence, the same rights to request or refuse treatment that you would have if you were capable of making and communicating those decisions.
This differs from Durable Power of Attorney. Durable Power of Attorney allows an individual to make bank transactions, sign Social Security checks, apply for disability, or simply write checks to pay bills if you become incapacitated due to a medical condition.
One advantage of having a health care proxy is that they can make medical decisions based on the most up-to-date treatment information.
What is Durable Power of Attorney?
As part of your Advance Directives you can draft a legal document(s) providing power of attorney to others. Durable Power of Attorney allows an individual to handle financial or business activities such as bank transactions, signing Social Security checks, applying for disability, or writing checks to pay bills if you become incapacitated due to a medical condition.
What is a Living Will?
A living will is a written document that explains what types of medical treatment you so desire in the future should you become incapable of communicating your wishes.
Living wills can be very specific or very general. Most living wills include a statement that says: “If I suffer an incurable, irreversible illness, disease, or condition and my attending physician determines that my condition is terminal, I direct that life-sustaining measures that would serve only to prolong my dying be withheld or discontinued.”
Each state has its own laws about living wills including how they are to be arranged, when they go into effect, even how your instructions will be applied. Some states require living wills to be witnessed, some states have a standard form that is recommended, and some require it to be signed before a notary.
Without a living will someone else will make medical treatment decisions for you if you should become incapacitated.
iv. Ensuring Care for Your Pets
Our pets are often seen not only as our friends and companions, but also as members of the family. It is hard to imagine continuing living our lives without our pets. But what if your pets outlive you? What if you are no longer able to care for them? It’s important to put documents into place that will clearly state who will look after your pets, how your pets’ safety can be ensured, and what finances will be provided to pay for their needs.
If pets are a part of your life, it’s important to plan ahead not only for yourself, but also for them as well. Many states allow pets to be included in wills and most life insurance companies allow some money to be used for pet trusts. A pet trust provides money for a designated caretaker to cover pet care expenses.
More than 30 states now allow pet owners to set up pet trusts. One great thing about Enforceable Pet Trusts is that they are “enforceable” meaning courts can monitor the trustees to make sure that pets receive the care deceased owners intend. They ensure that all funds targeted for a pet’s care are indeed used for that purpose. To find out what states currently allow pet trusts to be established and enforced, you can contact your state’s attorney general or the Humane Society of the United States via www.hsus.org.
If your state does not allow a pet trust you can leave funds to a designated person charged with administering care without court oversight; this is known as an Honorary Pet Trust. You can write a contract with this person and designate your estate executor to act as your agent in administering the contract.
Whether you’re setting up a will or a trust, you need to provide a reasonable amount of money for both the trustee and the pet caretakers. Pet care costs will vary with the age and health of your pet but you’ll want to cover food, grooming, vet care and provide for additional expenses. Using the proceeds from a life insurance policy is one way to fund care of your pets. This can be an affordable way to care for the pets you leave behind. If you pass away before your pets and while the policy is in force, your death benefit can fund a pet trust that you have established.
Some pet rescue groups and pet sanctuaries offer pet care and placement programs, yet they may require a per-animal fee or bequest detailed in your will. If this is an option you would consider, visit these facilities to see how animals are cared for, who looks after them, whether the animals are receiving adequate attention and exercise before making arrangements with them. It is the only way you’ll know firsthand that your pets will be left in good hands. Also, review their adoptive placement criteria and practices to ensure they would place your pet in a good home. Since many rescue groups have small budgets, discuss what might happen if the organization faces funding or staff shortages. Be sure to draw up the agreement with the group in writing before putting it into your will.
The best place to start a conversation about this type of estate planning is with your accountant, attorney and life insurance representative. Since Enforceable Pet Trusts are not available in every state, and because this is a relatively new option, some estate planners may not be familiar with it.
The Humane Society offers online tools and information for planning for care of your pets. Visit the HSUS website at www.hsus.org/petsinwills.
iv. Funeral Wishes