Someday, you may have a health concern befall you which leaves you unable to speak for yourself. What would happen if you could not communicate your wishes? Who would act on your behalf? Who would speak for you and for your personal health and wellbeing? Would they know what to say? Would they know how to make the best decision for you?
These questions are at the core of this article, and at the core of National Advance Care Planning Week 2018. From April 16-22, this week-long event focuses on encouraging families to discuss health care with their loved ones. Beginning such a conversation can be a challenge, not to mention the considerations that go along with it, but it’s an important step for all of us to take at some point in our lives. In this article, we hope to illuminate the importance of advance care planning and help you to examine the relevant questions thoroughly and thoughtfully.
A Difficult Conversation
Broaching the topic of advance care or end of life planning is rarely easy. These issues are complex and delicate, and many people even fear talking about them. Without a doubt, the conversations you’ll need to have might be emotional, and lengthy. But they’re conversations that are very much worth having. Start slowly, and you can tackle the issues together with those closest to you.
And remember, the conversations don’t have to happen all at once. It should be an ongoing and evolving discussion, allowing for changing or developing opinions and providing plenty of time for reflection and rest. The important thing is not to defer and to start having the conversations.
Talking about important things with loved ones is not always easy, but it is invaluable.
How do you begin talking about these things?
If you’re ready to talk about your healthcare, chances are your family and other close individuals will begin to feel more ready themselves. All should treat the subject with sensitivity, respect, and kindness, but be prepared to listen and be receptive to others’ viewpoints. Ultimately, your healthcare decisions are solely your own, but many people wish to make these choices with the aid and support of their family---and this often includes discussing various options and opinions together. Advance Care Planning Australia offers some ‘conversation starter’ tips and ideas for generating discussion here.
Most of all, these conversations are an opportunity for you to be heard; for your wishes and preferences to be made known and for a plan to be made which honours them and carries them out fully.
You can start talking about advance care at any time, but it may be of particular importance for those with chronic illnesses, those who have early cognitive impairment, or those nearing end of life. Ideally, advance care should be considered before the need for care becomes particularly urgent. This ensures that decisions are made with clarity and deliberation, avoiding situations in which decisions are made quickly---often under the influence of emotional stress or worry.
Why You Need a Decision-Maker
When you’re healthy and well, it can be confusing to grasp why you need to appoint a potential decision-maker on your behalf. But having a person who can effectively speak for you---and having a specific plan of care written down---can actually relieve a great deal of anxiety and worry about the future. It’s a smart move to make. Advance care is beneficial for situations in which you may become incapable of making your own decisions, especially those in which you have a significant injury or loss of function, or if it becomes apparent that you are likely to have little or no recovery from an illness or injury. Your decision-maker will know what you want when it comes to various specific scenarios, but even in the face of the unexpected, this individual should know you well enough to make a choice that reflects your values---to make the choice you yourself would make.
What to Talk About When Planning Advance Care
As you begin talking with family and friends about your health care future, the conversation will likely start out broad and general. Continuing on, you will need to get more specific so that you can consider a wide range of potential situations and decide upon your preferred response.
Who should you have these conversations with?
You should discuss advance care with your family, relatives, the individual(s) you would like to designate as decision-maker on your behalf, your doctor, and any other persons you deem important to the process.
A good place to start is with discussing your current and past health. Your state of health will help direct the conversation, and your medical history is important too.
Talk about your early impressions of the healthcare system, or about particular experiences that affected you. This might be a surgery you had as a child, or a family member whose illness you witnessed. You can both talk about these thoughts and consider them privately yourself. Often, these previous healthcare experiences have strongly influenced our present day opinions. It’s a good idea to examine your beliefs about medical care and address any worries or questions you might have. Your physician will be particularly helpful for such instances.
Speak about your own values. What makes life worth living? What is important to you? What do you treasure most in your own life? What would you be willing to give up?
If you have religious beliefs, bring them into the conversation. Do your beliefs impact your decisions regarding healthcare or treatment? Will you want a priest, minister or another religious figure to visit you in hospital? For many, religion and spirituality are highly influential factors to be considered with advance care planning.
The potential for discussion is endless, but in many ways, this is the most important part of developing an advance care plan. It is during such dialogues that you can make your values and opinions known to those you love. If any of these are to make decisions on your behalf, it is of the utmost importance that they understand the values you hold dear. This will help them make the decisions they believe you would truly want.
Talk about your long-term goals as well. While this goes hand-in-hand with values in many ways, assessing your goals helps you to make the best decision that reflects what you wish for your life to be.
You get to decide what matters in your life.
Specific Treatment Decisions
As you begin to create an advance care plan (and a written Advance Care Directive), you’ll want to turn the discussion to various potential situations. This can be a particularly tough part of the conversation because it involves facing the realities of certain unpleasant situations. However, this is a necessary part of advance care because it lets your loved ones know exactly what your wishes are in a given circumstance.
When talking about each scenario, take the time to think deeply about your decision, and discuss with loved ones and your doctor, if desired. Then, make clear statements about each of your decisions so that there is no uncertainty about your opinion.
The treatments or issues you face will depend upon your state of health and your particular medical conditions. Common treatments might include surgery, antibiotics, and blood transfusions, or treatments for cancer such as chemotherapy. In each case, it is necessary to weigh the possible outcomes (both positive and negative) of undergoing each treatment. For instance, chemotherapy, though often effective in treating cancer, can carry with it significant and sometimes debilitating side effects. Deciding what treatments you’ll accept and which you won’t, is an immense decision that belongs to you. There’s no right answer but that which is best for you personally.
In advance care planning, you should consider your preferences for various types of life-prolonging treatments. These are generally procedures or treatments which are designed to assist with living a longer life. They may be emergency procedures, such as cardiopulmonary resuscitation (CPR) which is meant to restore breathing or heart capabilities when these have stopped, or treatments which take place over many months or even years, such as dialysis for kidney failure or kidney disorders. As with any of the decisions involving your future medical care, weigh your values, beliefs, and goals against the possible outcomes of each treatment. You can read more about the ‘benefits vs burdens’ of various treatments here.
Another consideration is your views on palliative care, which provides relief for the symptoms of those with a serious illness. Essentially, palliative care is designed to make a patient more comfortable in times of pain or discomfort. Often, palliative care is administered when a terminal patient is nearing end of life, compassionately striving to provide a patient with the highest possible quality of life. Palliative care can encompass many different factors, but often refers to the administration of painkillers, as well as the environment in which care will take place. You have the right to choose the level of pain management, as this can alleviate discomfort but can also cause fatigue and ‘foggy head.’ Some patients would prefer to deal with a bit of pain in order to remain more alert and clear-headed. You also have the right to determine if you’d prefer to be in a hospital or at home in such a situation, and your loved ones and medical providers will honour this as fully as possible.
Creating An Advance Care Directive
Advance care planning usually leads to the developing of an Advance Care Directive. Often known as a ‘living will’, this is a written account of your health care preferences, written by you. In some states, this document is also called an Advance Health Directive. Though it goes by many names, the intention of it is the same: a record of what you yourself want with regards to your future care.
It will include your values, opinions, and goals, plus your desires in various treatment situations, as mentioned above. You can also formally appoint a decision-maker, someone who can intervene on your behalf and make decisions regarding your health care if you are unable to do so.
This individual can be a partner, sibling, adult child, religious advisor, parent, friend, or anyone you so choose. This should be a person you trust and whom you feel confident will make decisions with respect to your wishes. They must be at least 18 years of age, available when needed (living in the same state/territory is helpful), and be willing and able to advocate on your behalf with health care providers and family members. In some states, you can appoint a secondary decision-maker as well.
Your Advance Care Directive will likely need to be witnessed by someone who can authorise such a document, such as a legal practitioner.
Each Australian state and territory has its own process for Advance Care Directives. This site will help you find the relevant information for your state/territory of residence.
Finally, provide completed copies of your Advance Care Directive with various important people and organisations. These include your local doctor, your hospital, your appointed decision-maker(s) and any specialists you see.
With this completed, you’ll have peace of mind that, should it be needed, your Advance Care Directive will help ensure your personal healthcare preferences are upheld and carried out the way you desire.
Your Decisions Made the Way You Want Them
Talking about advance care can be difficult for many. But the importance of it can’t be overstated. For adults at any stage of life, and particularly those with chronic illnesses or of an advanced age, having an Advance Care Directive can provide you with ease and relief. It also secures a sense of autonomy and authority, making your voice heard even in the event you cannot someday speak for yourself. With the proper planning and conversations, you can feel confident that decisions to be made for you are done in the way that you would have made them.