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Being someone’s health care agent is a tough job, especially if family members are at odds. You can protect your agent by: • Talking to your family about your wishes and what you’ve discussed with your agent • Explaining to other family and friends why you’ve chosen this person to play this role
There are many heartbreaking decisions at the end of life, and they can come in rapid-fire succession, short-circuiting your agent’s ability to make rational decisions based on your wishes. If you are afraid of emotions ruling the day, a close friend or lawyer may be the best person to carry out your wishes.
For all of the focus on patient autonomy, none of us makes decisions in a vacuum. What we want is often shaped by the people we love and the context of our lives. Giving the people we love agency and choice in our care is something that may feel both right and useful.
It may seem like excessive planning to write your wishes down in case you get Alzheimer’s one day, but when you consider that one in three seniors dies with (and many from) Alzheimer’s disease or another form of dementia, it’s actually a very good investment.
Your decision to donate can save up to eight lives with your transplanted organs and enhance many others with your tissue.
Feeding tubes can serve as a bridge either to more life or toward more time to figure out whether or not a traumatic event is going to be survivable. But in late stages of terminal illness, artificial nutrition and hydration can actually become a problem. In
Choosing to be an organ donor may be the most direct way you can save a person’s life. In the United States alone, twenty-one people die each day waiting for an organ transplant.
People are often hesitant to ask for small quotidian things to be done for them, but these can make all the difference. Do you prefer to take baths or showers, and how often? How do you take your coffee? Are there songs that will reel in good memories? Are you a side sleeper? To make sure you get your needs met, think about writing “care and handling” instructions for yourself.
both.As of now the only states that do not meet the National POLST Paradigm criteria are Vermont, Maryland, Nebraska, and Massachusetts. That just means they have a different type of form for patients to complete to make their wishes known. If you are elderly or know yourself to be in the late stages of illness, especially when your body is growing weaker no matter what you do, having a completed and signed POLST form is the best single thing you can do to protect whatever wishes you have for your own end-of-life care.
PUT YOUR PAPERWORK SOMEWHERE SAFE AND OBVIOUS Once you’ve done the hard work of getting your wishes down on paper, make sure they don’t end up in a box on a high shelf where no one would think to look. Consider doing the following: 1. Copy or email your completed forms and give them to your health care agent and other family members, and to your doctors (all of them). Many of the electronic medical systems that your doctors and hospital use can upload your directive so it becomes a part of your chart. 2. Register them online with the U.S. Living Will Registry or MyDirectives.com. Documents can
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you really need to invest in a will only if the property is in your name alone. If it’s jointly owned with your spouse or child, it will automatically be transferred to him or her upon your death. You can also create a transfer on death (TOD) deed for the property while you’re alive to give it to a specific beneficiary (person or organization of your choice).
“As soon as the spouse is allowed in, it falls apart.”
The goal is to avoid a long, protracted conflict when you’re dying or after you’re gone, and only you can know how best to do that.
If your children know what’s coming, there’s no seismic shock: they can prepare, ask you questions, and make their peace with it or at least have it out directly with you instead of with their siblings in a court of law.
Parenting never ends. It won’t be easy to tell your kids if you’re making changes they won’t like, but it’s still your responsibility as their parent.
If you’re uncertain whether you need a lawyer or not, email a few and outline the size of your estate or set up a thirty-minute meeting and ask for a road map for your situation. Another question to ask is who in the office would handle the work, as paralegals have lower rates.
In nearly every state, a living trust will ensure a quick transfer of your property and assets to your chosen beneficiaries and spare them having to go to probate court.
Any jointly owned property (where the title is under both your name and your spouse’s or child’s) will automatically transfer to the other owner when you die. But
Remember, qualified retirement plans don’t go into your trust. These include IRAs, SEP, and 401(k). The IRS considers putting any of these into a trust to be equal to changing the owner of your IRA or 401(k) to the name of your trust, and you will be taxed.
WHAT IS PROBATE? (AND HOW TO AVOID IT) When there is no trust, an unfunded trust, or your will includes property solely owned by you—like your house and car and bank accounts with no beneficiaries (the legal term for these is probate assets)—your survivors will have to go to probate court to settle your estate. Here’s what you need to know:
The moral of the story: If you have any assets to leave behind, not doing your will and trust dramatically complicates the grieving process and drags your family through unnecessary misery.
And don’t forget to update beneficiary designations as you have (or marry into) more children.
WHAT TO PUT INTO YOUR “WHEN I DIE” FILE □ Advance directive that’s signed (and notarized if necessary) □ Lawyer and accountant’s contact info □ Birth certificate □ Will and living trust (with certificate of trust) □ Durable power of attorney for finance □ Life insurance policy plus agent’s name and contact info □ Military service documents □ Bank account plus any safe-deposit box information □ Investment information □ Real estate documents and deeds □ Debtor information (credit cards, loans, membership dues) □ Copy of driver’s license and Social Security card (or number) □ Marriage or divorce
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Life insurance with a long-term care component. This is a hybrid policy that requires a large one-time premium; the money can go toward a death benefit for your heirs, or a percentage can be converted to purchase long-term care.
The common misconception is that you need to be completely bankrupt to be eligible. You don’t. As
FAST FACT When you apply for Medicaid coverage, the Feds will check your finances up to sixty months in the past.
While your individual relatives will not be personally held responsible for your debts after you die, your estate is—so money and assets that you thought would go to your heirs will be combed through and used to pay any outstanding bills.
In a filial responsibility state: Adult children may be required to pay for a deceased parent’s unpaid medical debts, such as those to hospitals or nursing homes, when the estate cannot.
Moving from “healthy” to “sick” is a process. First comes a diagnosis; then, at some point, the news that it’s not curable or the realization that you’re not interested in trying to cure it anymore. There will be time to freak out, deflate, process, reorient, learn, and come up with a response. But today—the day you get that dose of hard news—is a moment all its own.
In general, throughout this odyssey, it helps to hold things lightly but with attentiveness. The danger of not taking a prognosis seriously is that you’ll put off things that are important to you—telling your kids that you’re proud of them, letting go of grievances, dealing with your will—and then, suddenly, it will be too late. ——
For those of you in this situation, the way forward is much the same as for people with a diagnosis: be attuned to your body. With or without a diagnosis, you and your doctor should be tracking your body’s function and doing so over time.
Doctors often don’t talk about death because they don’t want to destroy hope. Hope is a powerful force: it wills us out of bed in the morning and helps us put up with the difficulties of treatment and of being a patient, of living in a world we don’t totally understand and can’t control.
It turns out that there’s no evidence that being honest about a terminal condition destroys hope and plenty to suggest that it can bring patient and doctor closer.1 In fact, openly and supportively discussing bad news most often winds up feeling like a relief to the patient.
Even if you want the doctor to make decisions for you, that doctor needs to understand what is most important to you so that she can tailor treatments and treat you with respect.
Often the worries that surface tip you off to what needs attention. Maybe you can’t stop thinking about what will happen to your spouse’s health after you’re gone, or how you’re going to get the kids to school on chemo days.
Whatever it is, your mind is trying to tell you something. Start somewhere. The idea here is to ease your burden wherever possible to free up time and space.
How has my mood been? If you’re angry, where is the anger directed? If you’re sad, how are you handling it? If you’re strangely giddy, you either have everything in perspective, or you may be in denial.
What am I most proud of? What do I like about myself? What are your strengths or interests? Identifying those will help you make decisions absent fear or nihilism. Look for aspirations: Who do I want to become? Is there a trait or a habit I’d like to change? There is always room for growth.
What do I understand about my diagnosis? What do I know about treatment options? This is generally one of the first questions any trained palliative care clinician asks when meeting a patient. Asking and answering this question is a great way for you and your doctor to get aligned.
1. Which of these is my first priority: amount of time left, or quality of time left? 2. How much time do I want to spend with family and friends? 3. How much faith do I have in the health care system? In my doctor? 4. Do I have dependents, and what do they need from me? 5. What are the financial costs of possible treatments versus no treatment? 6. Where do I want to be when I die? 7. What are my opinions regarding life-support measures? 8. Do I want to make health care decisions, such as treatment choices and whether or not I want life support, or do I want others to make them on my behalf?
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You may think the end of life is a time for grandiose moments, but the things that make us love life are often very small.
Your ability to care for yourself has changed. You’ve become dependent on others for basic acts like grooming or hygiene or getting out of bed; or others in the home have become dependent on you because they’re sick or disabled • Your perspective has shifted in a significant way. Religion has entered or left your life; or you’ve had an epiphany about what really matters to you in the end
Though doctors occasionally underestimate how long a patient has to live, they are more likely to overestimate
A prognosis is more accurate when it’s based not just on tests but also on your functional status (what you can and can’t do in daily life).
Prognostication is more reliable when functional changes are noted over the course of several doctor visits rather than gauged from a single point in time. You’re looking for changes to whatever has been your baseline. For example, if three months ago you were jogging five miles per day and now you’re in bed most of the time, that’s significant and different from someone who was previously chronically immobile.
The third pattern is more typical of progressive neurological illnesses such as Alzheimer’s and other kinds of dementia. This path is marked by slow decline in cognitive and bodily function. Energy steadily fades.
TIP In practice, most treatment decisions are made based on what the doctor believes2, not the patient, so you do need to assert yourself.
FIRST OF ALL, GET THE “Giving up” language out of your head. Saying no to treatment just means choosing a different path. Yielding to what will be—and what is out of your or anyone’s control—is different from giving up.
Maybe what you really need is relief from the burden that treatment is putting on your family, a burden that might be lightened by a frank conversation between you and your family and doctor.
Our medical system is wired to extend life—as defined by the presence of a heartbeat—whenever possible, no matter how uncomfortable the means.
