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A terminal illness diagnosis is traumatic for the ill person, caregivers, and loved ones. To that end, my clients have found this list particularly helpful, and I hope you do too.

Planning Tips When Confronted with a Terminal Illness

Published September 6, 2023

The Special Needs Alliance’s new issue of The Voice® is written by fellow SNA member.

Nicola Melby of McCarthy Summers Wood Norman Melby & Schultz, PA in Stuart, FL. The firm serves Martin, St. Lucie, Indian River, Okeechobee and Palm Beach counties in Florida in the areas of elder & special needs law, estate planning, guardianship, and wills & trusts, and more. Reprinted with permission of the Special Needs Alliance –

August 2023 – Vol. 17, Issue 8

A terminal illness diagnosis is traumatic for the ill person, caregivers, and loved ones. The loss of control and sadness can be overwhelming. Over my 30 years of law practice and coping with my husband’s and father’s rapid decline and death following a terminal illness diagnosis, I’ve learned that having some commonsense action steps can be calming and helpful. It gives one something to do. Something practical to take control over in an otherwise uncontrolled circumstance.

To that end, my clients have found this list particularly helpful, and I hope you do too.

Be sure that you have signed an Advance Health Care Directive and have a medical provider sign a do not resuscitate (DNR) order.

Have all advance directives and DNR orders on file with your medical providers, and make sure both are readily accessible at home. For example, consider folding the documents neatly in a baggy and affixing it to the outside of the refrigerator. Emergency medical technicians (EMTs) tend to know to check the fridge for important papers.

Seriously consider electing and accepting the services of your local hospice.

Then, be sure that there is coordination with hospice (which normally will be part of the team attending a terminal patient) to understand who will be contacted – when and at what times. Have hospice explain what to do if 911 is called instead of the hospice helpline.

Discuss funeral arrangements and if possible pay for the funeral and services before death.

Designate in writing your burial instructions. It is a good idea to designate an authorized agent to carry out your wishes, especially if you desire cremation. In my state, certain heirs are required to sign off on a cremation arrangement unless there is an authorized agent. If your desired agent for your funeral is not someone obviously given priority like a spouse, then find out what needs to be done to ensure legal status to make the desired arrangements. Again, this information should be included in the refrigerator baggy if you are being cared for in your home.

If you are a veteran, there are veteran’s burial benefits available …

… but you will need your original DD-214 (discharge papers) so you want to find this document or discuss with the VA your options if you are unable to locate the discharge papers.

Discuss your obituary with your loved ones and perhaps get it written before you die.

This will help your loved ones who will be responsible for writing the obituary.

Make a plan for your pets!

If anyone is disabled and receiving public benefits, determine whether there will be an income or asset award from social security …

… or some other income source that has a survivor benefit which will cause an increase in the disabled beneficiary’s income or assets and that might therefore affect the disabled beneficiary’s benefit. Determine what steps, if any, can be taken to correct the problem and maintain the benefit.

With your family, develop a list of who should be notified at death and in what fashion (card, telephone, etc.).

Think about making a notebook with all of this information.

Determine the gross value of your estate and ascertain whether estate taxes are going to be an issue …

… and, if so, what steps need to be taken to minimize the impact of those taxes as well as ensure that sufficient liquid funds exist to make payment.

Locate your tax returns, if any, for the past few years and the identity of the accountant, if any.

If tax returns have not been filed, verify with a CPA that there was not a need to file a return. If you need copies of tax returns, you will need a Form 4506 T from the IRS to request tax transcripts. The form is available at or here.

Take a good look at the 1099 forms that have been issued in prior tax returns and compare those to the known assets.

If something is different, find out what happened to the unaccounted for assets. Remember you are trying to make distribution of your property easy after your death, so you need to act now while you are still able to access information, or your attorney-in-fact can provide that authorization. Remember the attorney-in-fact’s authority under a durable power of attorney ceases at death.

Identify the sources of income and, if social security retirement or disability income is received, explain that social security may recapture that final check.

Determine whether any income sources have survivor benefits and obtain the contact numbers.

Ascertain whether anyone is receiving dependent health insurance coverage and, if so, what are the criteria for maintaining that coverage after death and the contact information related to that coverage.

If coverage ceases, direct the affected party to an appropriate professional to assist in obtaining coverage.

Review the title of each asset carefully and any beneficiary designations and make sure they track what is intended in your last will and testament.

Make changes while you can to ensure easy distribution following your death. For example, if “Joe” is to receive the car and there are no creditor issues etc., why not discuss the ramifications of transferring the car title to Joe now while the title transfer can be readily signed and then transferring the title in appropriate instances?

If there are life, health, or property insurance policies, locate them and review the contents.

Especially in the context of real property policies, pay any premiums that may be due as soon as possible for as long as possible as there are a number of issues that arise after death with vacant real property. In some states the expenses of a primary residence or homestead property are not an estate expense but instead an expense to be paid by the beneficiaries of the real property.

Similarly attend to homeowner’s association dues, utility bills, and any other recurring bills or automatic debits that should be canceled.

On the other hand, you may want to make someone an owner on your checking account so that the account is not frozen at your death, and automatic bill payments for your home can continue until it is sold.

Discuss whether your mail should be forwarded …

… and, if so, to whom and when it should be implemented.

Finally, if you are the caregiver providing the day-to-day care, take care of yourself!

Try to delegate some of that caregiving for some time each day. It is challenging to let someone else step into that role because your time together is finite, and you want to be sure to make every moment count. But exhaustion is never good for anyone, your loved one or yourself. Remember the adage: “secure your own oxygen mask, then take care of those with you.” Take some time each day for yourself. You will be a better caregiver for it.

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