How to Care for a Terminally Ill Family Member
If someone you love has just received a terminal diagnosis, you are likely in shock and not sure what to do next. One productive place to focus your energy is on learning more about the diagnosis, to prepare for protecting your loved one’s quality of life and ensuring his or her final wishes are honored.
Clarify the terminal illness definition
In the early days after someone you love receives a terminal diagnosis, you may find yourself wondering, literally, what is a terminal illness? What does that even mean? Generally, a terminal illness is a disease or condition that has no cure and is likely to lead to the patient’s death. That’s the standard answer, but your loved one’s physician may use a slightly different terminal illness definition — one that includes an expected lifespan, for example. It’s always a good idea to ask the doctor for clarification on what he or she means by “terminal.”
For that reason, it’s helpful to pause mentally when you hear the word terminal. Don’t jump to any conclusions about what it means until you ask the physician for more details, such as:
- What, specifically, do you mean by terminal? Can you estimate lifespan?
- What is the name of the condition?
- What are the treatment options? What benefits could we see?
- How quickly will the condition progress from here?
- What changes will I see in my family member as the condition progresses?
- What level of care does my family member need today and going forward?
Terminal illness list
Many health conditions have the potential to be deadly but can be survived with early treatment. You’d see several examples on any terminal illness list, including:
- Coronary artery disease (CAD) is a common one. This condition, related to the buildup of plaque in coronary arteries, affects millions of Americans each year. CAD is treatable but can also progress and become terminal.
- Strokes, as well, can range from minor with temporary symptoms to severe with long-lasting and life-threatening symptoms.
Other common terminal illnesses include:[i]
- Alzheimer’s disease
- Advanced End Stage Senescence or Debility
- Amyotrophic Lateral Sclerosis (ALS)
- Liver Disease
- Pulmonary Disease
- Adult Failure to Thrive
How to deal with terminal illness in your family
Learning more about the condition helps you set appropriate expectations, so you can keep a level head as the disease progresses. That’s important, because you don’t want your family member to feel that the situation is burdening you. Instead, your loved one should know that you are a capable advocate, ready to do what’s necessary — from providing emotional support and to coordinating end-of-life details.
The terminal illness planning checklist below includes some ways you can step in to support your loved one. Consider talking through the list and letting your family member guide you to the highest priority items first.
1. Make a wish list
Encourage your loved one to make a wish list. That wish list will likely include simple things, like spending more time with the grandkids and eating more pizza. But it can also include aspirational, bucket-list wishes. Maybe your terminally ill mom has always wanted to visit Paris. If actual travel goes against doctor’s recommendations, why not bring Paris to her? You could host a French-themed gathering of close friends and family, for example. For bigger wishes you can’t fulfill on your own, reach out to wish-granting organizations like Dream Foundation and Fairy Foundation.
2. Explore care options and costs
You can also help your family member wade through the options for care and the related costs. These treatment decisions should consider how your loved one defines quality of life. It’ll be somewhere on the spectrum between staying comfortably at home, even if that means a shorter lifespan, and pursuing every treatment option available, even if that involves unpleasant side effects and hospital stays. Be a sounding board for your loved one to talk through that spectrum. That lays the groundwork for a productive conversation with the physician about treatment options and potential costs.
3. Identify strategies to cover cost of care
Ideally, your family member would decide on the best treatment plan first, and then figure out a way to pay for it (rather than settling on a treatment plan based on cost). Some financial strategies to help pay for the cost of care include:
- Health insurance, Medicare, or Medicaid. Private health insurance, Medicare, and Medicaid should cover a portion of medically necessary treatment costs, including palliative care and hospice care. The patient will still need to cover copayments and coinsurance as defined by the health plan.
- Viatical settlements. If your family member has life insurance, he or she may qualify for a viatical settlement — which involves selling the life insurance policy and its death benefit to a third-party for cash. Viatical settlements are an option when the insured has an expected lifespan of 24 months or less. The transaction usually delivers higher cash proceeds than surrendering the policy or borrowing against it, and the cash can be used to fund medical expenses.
- Life insurance loans. A viatical settlement transfers the death benefit and policy premiums to someone else, which means your family member will no longer have life insurance after the transaction closes. If your loved one wants to keep the life coverage, he or she may prefer to borrow against the policy instead. Generally, a life insurance loan carries a low interest rate and has no set repayment schedule. If the funds aren’t repaid, they’re deducted from the death benefit payout later.
- Savings withdrawals. Retirement accounts and other savings can also be a source of funding for out-of-pocket medical expenses. Offer to help your loved one budget to determine how much he or she can afford to spend from these accounts.
- Home equity. Home equity can be liquidated with a reverse mortgage, home equity loan, or home equity line of credit. A reverse mortgage is a good option if your loved one does not want to manage any repayments until the home is sold.
4. Provide emotional support
Don’t get so deep into end-of-life planning that you forget to spend quality time with your loved one. Encourage thoughtful conversation, but don’t force it. Everyone has their own way of dealing with stress; some benefit from talking and others benefit from listening. Be ready to take on whichever role your loved one needs most. Express your desire to “be there” for your loved one and say “I love you” more times than you think you need to.
5. Establish advance directives
Advance directives document a patient’s preferences for future medical care, including life-extending treatments like resuscitation and intubation, as well as antibiotics, antivirals, palliative care, and even organ and tissue donations. For these preferences to be binding, they have to be stated in writing, signed by one or more witnesses and, possibly, notarized. Since the exact rules vary by state, you should consult with a local attorney. Note that advance directives normally do not become effective until the patient is incapacitated and unable to make his or her own treatment decisions.
You might also encourage your loved one to name a healthcare proxy, who has power to make healthcare decisions if your family member cannot. Healthcare proxies don’t replace the advanced directive; they complement it. It’s not uncommon for a situation to arise that isn’t covered by the advance directive. When that happens, the healthcare proxy can dictate treatment based on his or her knowledge of the patient’s preferences.
6. Organize financial documents
If your family member is comfortable sharing sensitive information, offer to help organize financial documents, such as life insurance policies, property deeds, and bank account information. Ideally, you’d make a list of property and accounts, along with access details such as passwords. Keep the list along with key supporting documents in a safe or safe deposit box.
7. Review and update will
If your loved one has minor children or owns any property that doesn’t have a listed beneficiary, he or she needs a will. Without a valid will, the courts will decide how to divvy up property based on next-of-kin laws — which may not be in line with your loved one’s wishes. A will specifies how to distribute property, shares preferences for guardianship of minor children, and assigns an executor to the estate. The executor is the court’s point of contact during the probate process and is responsible for coordinating documentation, liquidating assets, and distributing proceeds to beneficiaries.
Each state defines the legal requirements of a valid will. Typically, the document must be signed by the testator and at least two witnesses. In some states, the witnesses cannot also be beneficiaries listed on the will. Consult with an experienced attorney in your state on behalf of your loved one to confirm these requirements.
8. Review beneficiaries on insurance policies and bank accounts
Assets that have a stated beneficiary will be distributed directly, outside of probate and without regard for preferences stated in the will. For example, if a life insurance policy names cousin Bill as the sole beneficiary, cousin Bill will receive that death benefit — even if the will doesn’t mention cousin Bill. For that reason, it’s wise to remind your family member to take another look at who’s listed as beneficiary on bank accounts, life insurance policies, and annuities.
9. Clarify funeral plans
Ask your loved about his or her wishes for a final send-off. If plans aren’t already made, volunteer to do the legwork. That will involve researching options and costs at first and, later, coordinating a funeral that aligns with your family member’s preferences.
Let your family member guide you
There’s no single right way to support a terminally ill family member. If you’re uncertain how to proceed, start by opening up the lines of communication. Express your willingness to advocate for your family member’s final wishes and see where that conversation takes you.