For the ill, and the dying, and their caregivers and loved ones … here are some suggestions and advice for minimizing suffering and having a good death. We’ll talk here as if it’s you who is the ill and dying person, but this is all equally relevant for caregivers and loved ones.
Identify your support team, and (most critically) the person who will have your medical power of attorney. You’re going to need a lot of care, and a lot of support. The medical system is never easy to negotiate. And you’re ill. It’s difficult or impossible for you to deal with things. You need a support team. It could be your spouse, or any of your children, your siblings, your friends.
Most important, you need one person — think of that person as your team leader — to have your medical power of attorney. This means that they have the legal right and authority to make medical decisions for you, if you are unable to. Hospitals, hospices and nursing facilities will all look to that person — to be involved if you’re still able to make decisions for yourself, and to make those decisions for you, if you’re not. You can always revoke this power, or designate a different person. And you can designate a backup to the person with medical power of attorney. In other words, the authority will switch to the backup person if the primary person becomes unwilling or unable.
Get your paperwork in order. Once you’ve decided who will have your medical power of attorney, and gotten that person’s agreement, execute the legal document bestowing that power. Make numerous copies of the original document, and keep them in an obvious and easily-findable place. You’ll want to have copies easily available for when you go off to a hospital, hospice or nursing facility.
It’s also a good idea to execute a power of attorney for property, so that someone can manage your financial affairs if you’re unable to. This can be the same person who has your medical power of attorney, or someone different.
(Important note: typically these documents are structured so that only one person has your medical power of attorney at a time. But exceptions to this rule are possible. For example, you could give your medical power of attorney to two of your loved ones, so that either of them could make decisions for you if you are incapacitated. It can get complicated, so if you want anything other than the simple one-person-at-a-time rule, be sure to consult an attorney.)
There are other documents where your exact medical wishes can be specified — what you want, and what you don’t want. When you’re healthy, you can do a living will. If you’re ill, your physician can do a legally-binding document called a Physician’s Orders for Life-Sustaining Treatment (POLST), or a Do-Not Resuscitate (DNR) order. We’ve got a separate section on all of these legal documents.
Talk about it, with your loved ones, with the person who has your medical power of attorney, and with your doctors. They need to know what you want … what types of care you want, and what types of care you don’t want. And circumstances change. What you want when you’re healthy or when you’re in one stage of an illness, might not be what you want later on, when you’re sicker.
In having these conversations, it’s important to be both general and specific. Specific, in the sense that you may have decided on particular medical procedures or treatments that you do or don’t want. (For example, if your heart stops, do you want to be resuscitated? Would you want a breathing tube?) And general, in the sense that you have communicated your primary goals. Are you trying to maximize your time? Still trying for a cure? Or are you focusing on minimizing your suffering?
Know When To Say When: Often, in the course of a progressive illness, there comes a point where you want to say no to further aggressive medical treatment. You don’t want that breathing tube. You don’t want the endless drawing of blood. You’re just not up to going off to the hospital one more time. You’ve had enough.
That’s the point where you want to stop focusing on treatment, and emphasize comfort care. Palliative care, it’s called. You’re trying to palliate (alleviate, mitigate, reduce) your suffering.
Be aggressive with palliative care: now is no time to spare the pain medications. (Don’t worry about getting addicted!)
Consider hospice: Hospices can be wonderful, both in-patient or at home. At home, they provide equipment — hospital beds, oxygen units, etc. They provide nurses and other caregivers who will visit daily — and they provide medication — the opiates and other medicines that try to keep you comfortable. In an in-patient facility, they provide round-the-clock nursing care. And many of the people who work for hospices will be the most caring and compassionate you’ll ever meet. But as with any medical institution, carefully check out any hospice you’re considering enrolling in. There are good ones and not so good ones.
Keep in mind also that the hospice philosophy — keeping you comfortable while neither speeding nor retarding death — might not actually minimize your suffering. You want to make sure that your hospice will provide all of the needed medication to keep you comfortable, even if it speeds up your death.
Consider stopping eating and drinking. One way out is to stop eating and drinking. (This is often called “VSED” — voluntarily stopping eating and drinking.) If you’re really, really sick, you might not have much interest in food anyway. It can take a few weeks, and you have to stop both eating and drinking. But sometimes people find that this is a relatively painless way out … and sometimes it’s the only way out. Towards the end, you lapse into a coma. Note: you’ll need a lot of care, and you can’t do this alone.
End of Life Choices of Washington has a very good guide to VSED, and Compassion and Choices also has an excellent guide on VSED. We highly recommend calling C&C’s end-of-life consultation service at 800-247-7421 if you’re considering VSED. And there was an excellent article on VSED in the New York Times on October 21, 2016.
If you live in one of the states where medical aid in dying is legal and if you qualify for the law, consider taking advantage of it. Remember that you have to be within six months of death in the reasonable judgement of your doctor, a mentally capable adult, a resident of the state, and able to swallow and keep down (“self-administer”) the meds. (If you have a feeding tube, they could be put into your feeding tube.) You’re doing a great public service by taking advantage of the law, even if you never use the meds.
Even if you don’t live in one of those states, or you do but you don’t qualify for the law, you can still choose to hasten your death. If you are considering this, start planning as early as possible. Making arrangements can take time, and sometimes there is only a certain window of opportunity when it is possible. Contact the Final Exit Network at 866-654-9156. Read Final Exit: The Practicalities of Self-Deliverance and Assisted Suicide for the Dying, available at www.finalexit.org in print, e-book, audio book, VHS or DVD.
Remember that you’re never committing to anything. You’re never putting yourself in a position where you have to end your life. You’re giving yourself an option that you may choose to exercise, if and when you judge your suffering to be intolerable. People often find that just having the option, gives them comfort, and the courage to go on another day.
Keep in mind also that being in an in-patient hospice is probably incompatible with making a final exit, at least in Illinois and at this time.
And in conclusion: Courage! This is something that we’re all going to do. (It’s a great pity that we can’t talk about it afterwards!)