Chronic Illness Advanced Care Plan

Living with chronic illness is a challenge by itself. It can be very demanding on your time, your energy levels, and your mental focus. You might be so busy juggling a thousand things through the day that you may not find any time to consider what your future needs are.

But it is important to spare a little time for this and consider an advance care plan. An advance care plan is the safety net that every single person should invest in. This will ensure that you are not caught unprepared during a financial crisis, adding to the emotional and mental stress that you may be undergoing already during these tough times.

Contrary to popular belief, it does not take a lot of time to set this up either. All you need to do is sit and jot down a list of questions that you need to ask yourself.

  • What are the treatment options you need in a medical emergency situation?
  • What about your health decisions as well as other important decisions when you are rendered incapable of making them yourself?
  • Is there a person who you would like to entrust the mountainous task of making these decisions for you?
  • How do you ensure that all your medical, emotional, and financial needs are met?

With an advanced care plan, decisions like these are not left open ended. You have the assurance that they are made according to your desires only.

How to get started?

The first step is to complete some basic documents to take control of your future on your own. If you are debilitated due to chronic illness or are living with a caregiver, you might want to consider engaging the services of a lawyer.

There are two critical documents that you need to be aware of. With these advanced directives in place, you will be empowered to entrust a loved one, or a relative, or a close friend with the power to handle your decisions if you were to ever become unable to handle the decisions yourself.

A Last Will

The Last Will & Testament is a legal document that will dictate your instructions in the event of your untimely death. This information includes some of the most important ones, so please ensure that you read this carefully. Who do you wish to make a legal nominee in case you have minor children? Who inherits what part of your belongings? What happens to your property that is not explicitly mentioned in the last will? The last will also enable you to engage the services of an executor to supervise the distribution of property and payment of all debts and taxes.

Please be aware that Living wills are different from the last will. Living wills are created to ensure that your medical care, social and emotional wellbeing is taken care of in the event of your health failing to an extent that you are unable to communicate your wishes. Or in the event when your decision making is severely impaired.

The last will document on the other hand lays out details regarding the specifics of end-of-life care—whether you want to have a feeding tube, be put on a respirator, etc.

Power of attorney

The second vital cog in the wheel is the power of attorney. This incredibly powerful legal document entrusts someone to legally step in, on your behalf when you are rendered incapacitated or unable to make decisions for yourself. It is also called ‘Appointment of Health Care Proxy’ in some cases.

While this is just one example, you can actually use a power of attorney for any and all aspects of your life. The exact extent of the power that you grant a person also varies. You can, for instance, limit the power of the document to be applicable only when you are unable to act on your behalf and cannot make sound decisions. On the other hand, you can also make this an all-encompassing document that grants a person of your choice complete legal control over your decisions, if you wish to live a hands-off life in your sunset years. But please ensure that you trust this person.

Selecting an Agent to work on your behalf for the chronic care illness plan

Often, patients with chronic illness or at a stage of palliative care are unable to invest time and effort in getting these legal documents sorted. That’s where an agent steps in. An agent can work on your behalf and make it easy to get these documents in order. When done right, it can take a huge load off your shoulders.

How to choose the right agent?

The key is to hire the right person. It goes without saying that not all agents are cut from the same cloth.

That’s why the Caring Voice team has created this brief guide that will help you get on your way. With this, you will be able to select a person who you can be sure is acting in your best interest, rather than it being the other way round.

Here are some tips.

The Agent needs to be assertive – You need an agent who is assertive if the need arises, so that your wishes are taken care of, even in the event of the medical organization being unreasonable or stubborn. At times, the agent may have to face a barrage of insinuations created by family members who, let’s face it, are looking after their interests a little more than they are watching out for you. It is crucial that you engage the services of a person who can see you through this phase. Assertion when the situation demands, especially if you sense that there might be a conflict of interest in order.

Look for a person close enough to you – We are not talking about being close on a personal level. We are talking about living in close proximity to you. There may be times when this person has to spend weeks making arrangements and organizing paperwork. So, someone in close proximity might always be a better bet. That said, there are ample agents who work remotely and still offer great services. So being in your city is not really mandatory.

Is the person willing to take on the responsibility – Generally, if you assign a person as the power of attorney for finances in the event of your health failing or you becoming debilitated, it is recommended that you name the same person as your healthcare agent too. You can name different people too, mind you. But it is important that you engage the services of people who are willing to work as a team. Usually, different agents handling two critical parts of a person’s will/retirement plan doesn’t go along that well. One problem that may arise is your financial agent potentially hindering your healthcare agent’s access to finances for critical services such as medical bills, supplementary care. These aspects will be well within their legal rights.

The conundrum that people often face is that sometimes, a single person may not be willing to take on these two important responsibilities. So you must find someone who agrees to do both.

Does this person share or understand your values – This is very important. The person that you hire as your healthcare or finance agent, must understand your values, what you stand for and what you would desire if you were in good health and able to make a decision. This person will be your representative and you expect them to act in your best interests. How would this be possible if the person does not share your values in the first place?

Do not name your doctor as your agent – One mistake that a lot of people may make is to engage a doctor as their healthcare or financial agent. But that’s a rookie mistake. In fact, there are rules in place to prevent this in many states. A potential downside of this rule is that if your partner or your close relative works in the healthcare setting, they might be restricted from taking on this role, even if you want to name them.

Other Advanced Directives

Advance directives are documents that make sure your end-of-life wishes are known and followed if you are incapacitated and unable to make your needs known.

In addition to these two important documents, you should also consider arranging advance directive documents. These documents will ensure that if you had any wishes at the end of your life, those will also be followed, even if you are debilitated or completely immobile and not able to communicate about your needs.

Some advanced directive documents are:-

Living wills: A document that dictates a person’s wishes for medical care they want to receive in the event they are not able to communicate their wishes or make decisions.

Medical (health care) power of attorney: A document that appoints a person to make health care decisions for you in case you are unable to speak for yourself.

Do not resuscitate (DNR): An order written by your physician that prevents your health care team from initiating CPR in the event of cardiac or respiratory arrest. This form is only valid if a doctor signs it.

How to obtain these documents?

To be able to acquire these documents, you must be above 18-years of age and of sound mental health.

The power of attorney and will papers can be completed on your own. But you will have to follow up on the necessary specific legal document requirements that vary from one state to the other. States may place specific restrictions such as the minimum number of witnesses who need to sign it, or if the document must be notarized.

Experts typically advise hiring a lawyer to assist with processing these documents to make sure your wishes are clearly laid out and the document is completed per the state’s guidelines. If you have DNR orders, then those must be signed by a physician.

Naming an alternate agent

You do have the option to name more than one agent mind you. What happens if your first choice agent is unable to take up the task due to various reasons? Think of this like nominating someone to inherit your will.

Only, in this case, you are nominating a second agent to work on your behalf if the first one is unavailable.

What to do once I get these documents?

If you have collected these documents yourself, you’d want to distribute them to the right people to ensure that your wishes are well known and communicated to the people around you. This is not mandatory, but it may ensure accountability in the event of your health failing. Share a copy of the appointed power of attorney to the agent, your healthcare agent, and to your financial agent if need be.

What happens without these documents?

No matter how remote, don’t discount the possibility of your health failing before you had time to collect these documents or assign legal representatives. If you have not created a will, then the inheritance will be determined by state laws. If your health fails and you are not in a sound mental state to make decisions, then the health care professionals will speak to your family members about the state’s legal decision making laws. Individuals will then be identified who may be able to make decisions on your behalf.

Is this legally correct? Not really. But it’s a slightly murky space that kind of hovers in the grey area. There’s no way to know if a state-appointed representative will really function in your best interest at all times. That’s why it’s important to have a living will and the last will in place.

Do you want to know more about this?

Check out this guide on advance care planning from the National Institutes of Health.

We hope that this blog post from the Caring Voice team helps you understand how to go about creating your end-of-life legal documentation. Feel free to browse through our blog and don’t forget to check out our helpful resources page in case you need assistance.