Caregiving: Advance Care Planning for your Spouse

A difficult but important aspect of caring for your spouse is preparing for her or his end-of-life stage. This not an easy issue to think about. But planning in advance for end-of-life care can help protect your spouse’s well-being and provide peace of mind for everyone involved.

People usually have strong preferences about how they would like to live in the final stages of life and what types of care they do and do not want. It is very important to involve care recipients and other family members in these conversations and decisions. The following questions may be helpful to discuss to determine your spouse’s preferences.

Questions

Dealing with the death of a loved one is never easy. The emotional impact alone is more than enough for family members to process. When you add in all the logistical responsibilities that come with a spouse’s passing, making decisions can become overwhelming. This summary describes several items you should consider to help relieve some of the burden and prepare you for the future. Some additional terms and legal situations may arise as you navigate your spouse’s end-of-life events. Click on the terms below to learn more.

Terms

Make sure advance directives are in place, including a Living Will and A Health Care Power of Attorney, which are described in more detail in Important Legal and Financial Documents. Give copies to the key people involved in your spouse’s life (with his or her permission.) You will want to make sure that your spouse has a will and that you know its location.

Ideally, married couples will make out wills and other essential documents together, know the location of documents, and know how one another intends to dispose of property. But for married couples that divide these responsibilities, good communication about the documents is still essential.

Probate assets are assets that people hold in their own names at time of death. These assets pass on to heirs according to terms of a will, subject to court supervision.  

The probate process often entails delays and costs. But some estate planning strategies can be used to lower delays and costs by passing assets to heirs outside of probate. These strategies include joint ownership, beneficiary designations and transfer on death designations. (Trusts can also be used for this purpose.)  

Many financial institutions allow the account owner to choose (designate) the person or persons to whom to transfer an account balance when the owner dies. People can make such designations for retirement accounts like 401(k)s and IRAs, and for annuities and life insurance policies.  

All beneficiary designations need to be kept up to date. If you do not update beneficiary designations, your account balances might be paid to the wrong person.

When they specify a beneficiary, the assets will pass to the beneficiary outside of probate. (Note that beneficiary designations take precedence over any provisions in a will.) Many people name primary and secondary beneficiaries, so that if the first beneficiary dies before the owner, there is no question about who the new owner will be.  

Along with the emotional toll, a funeral can exact a huge financial toll as well. In 2019, the average cost of a funeral was $9,000. For help planning and strategizing for this expense, read Transamerica’s article on average funeral costs and how to plan for them. According to the American Bar Association, reports consistently show that on average that families who plan in advance for funeral arrangements, spend less than families that wait until the need arises. You can pre-plan with or without pre-paying. If an application for SSI or Medicaid is likely, ask a consumer advocate about the options for pre-paying funeral expenses before applying.  The rules on this vary from state to state, but most states do not count a qualified pre-paid funeral as an asset for Medicaid or SSI.

This refers to assets like bank accounts jointly owned with another person. It is a common strategy for couples. The joint ownership makes it far easier for the surviving spouse to make financial decisions following the death of a loved one.  

Unless spouses struggle with issues of trust, it usually makes sense for the two to own assets like bank accounts, investment accounts and houses on a joint basis, with the right of survivorship.  

Palliative care and hospice also provide options for end-of-life care. Palliative care addresses the needs of patients who have chronic and/or life-threatening illnesses but are not likely to die soon. It is a medical specialty that enhances the individual’s overall comfort and quality of life by providing a wide range of services.  

Hospice is a holistic approach to caring for people who are terminally ill. It involves a team of trained professionals, available 24 hours a day, who provide medical attention, pain management, and emotional and spiritual support tailored to an individual’s needs and wishes. Both in home, and inpatient hospice care is available in most communities, allowing the choice of the best care option for the person. Medicare, Medicaid, and most private insurance cover the costs of palliative care and hospice care. It is often helpful to ask health care providers if palliative or hospice care is appropriate (many are reluctant to suggest these care options.)

For taxable accounts held at brokerage firms, the owner of the assets may want to have the brokerage set up a transfer on death (TOD) provision. Some bank accounts use TODs, too. A TOD acts like a beneficiary designation, so the assets pass directly, outside of probate.

Business ownership is another area for special consideration. The owner will want to plan carefully who will run the business upon the owner’s death. Specialized life insurance may need to be factored into the transition, so that ownership will transfer with minimal disruption. The assistance of a good attorney can be important to the outcome.  

Toolkits

There are also many toolkits and resources designed to guide caregivers through the processes of having conversations with their spouses, helping people identify their healthcare and financial preferences, and caring for individuals with specific diagnoses. Below are some toolkits for these different parts of advance care planning.

ResourceWhen would I use this resource?
Compassion & Choices My End of Life Decisions: An Advance Planning Guide and ToolkitDiscussing end-of-life care and planning with your spouse can be a daunting conversation. Compassion & Choices’ Advance Planning Guide can lessen some of the stress of this planning by offering clear instructions on what to cover in your planning and worksheets to document care preferences and priorities. The toolkit is available in English and Spanish. 
Compassion & Choices Mis Decisiones al Final de la Vida: Guía de Planificación Avanzada y Juego de Herramientas
Guides for “Managing Someone Else’s Money”The Consumer Financial Protection Bureau (CFPB) “Managing Someone Else’s Money” guides can help you understand your role as a financial caregiver, also called a fiduciary. Each guide explains your responsibilities as a fiduciary, how to spot financial exploitation, and avoid scams. Each guide also includes a “Where to go for help” section with a list of relevant resources. The Guides are available in English and Spanish.
Compassion & Choices Diagnosis DecoderIf you are accompanying your spouse to medical appointments, it can be overwhelming to think of the right questions to ask medical providers. Compassion & Choices’ interactive Diagnosis Decoder tool can help you and your spouse identify specific concerns about general illness, cancer, or dementia, in order to generate questions to ask your provider. 
Compassion & Choices Dementia Values and Priorities ToolIf your spouse receives a dementia diagnosis, it can be difficult to know how to plan as the dementia progresses. Compassion & Choices’ interactive Dementia Values & Priorities Tool is a resource to use with your spouse so that they can identify their values and care wishes after this diagnosis. Clearly documented decisions will help you give your loved one their desired care while lessening your decision making responsibilities. 
Financial Steps for Caregivers: What You Need to Know About Protecting Your Money and RetirementThis is a printable guidebook from WISER that summarizes the financial caregiving information on this portal. Caregivers can follow the steps in the guidebook to organize their household finances and decision making as they start caregiving for their spouse. 
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