If you or someone close to you has just received a terminal diagnosis, it’s normal to feel shocked and unsure of what to do next. Figuring out where to begin and who to contact can be overwhelming. The good news is that many end-of-life providers are available and often work together to support you to guide you through these difficult times. They frequently can refer you to other providers as well.  Having the right resources can ease anxiety for both you and your loved one. Here are some providers you may want to speak with and utilize.

End-of-Life Doulas

These non-medical professionals are trained to provide a compassionate presence and assistance as one approaches the end of life. Their roles can range from being a companion and a listening ear, to supporting legacy projects (writing letters, putting together scrapbooks), organizing the house, and helping you start to think about what you might want for a funeral—including home funerals. In addition, some doulas offer energy healing, like Reiki or massage.

It is important to know that there is no state-wide or national certification or licensing for end-of-life doulas, so you’ll want to look closely at someone’s training or use someone who is recommended by a friend or community member you trust. You can also find an end-of-life doula near you by visiting the National End of Life Doula Association (NEDA) website and using their directory. Doulas can often suggest funeral directors they know and connect you with other resources, like senior move managers. 

Hospice

If you or your loved one has a terminal diagnosis, you may want to choose hospice care. Hospice offers ‘whole person care,’ which means they support both physical and spiritual needs, whether religious or not. Care can take place in a hospital, nursing home, assisted living facility, an inpatient hospice, or at home. Hospice staff visit to provide social work, spiritual care, nursing, and medical help, and they can provide medical supplies as well. Most hospices also have trained volunteers who can visit for up to two hours a week to offer companionship. If you’re in a hospital or nursing home, or being discharged home, these facilities often work with hospice organizations and can refer you. Your doctor can also make a referral, or you can sometimes contact a hospice directly if you have the right paperwork from your doctor. The Hospice Analytics website has a locator tool to help you find options. Hospice services are often covered by both Medicare and Medicaid as well as private insurance. (Check with your providers to verify coverage.)  They can usually suggest funeral directors they trust and may know end-of-life doulas in your area.

Home Care Agencies

If you choose home hospice, your family may need to provide care around the clock. Hospices sometimes offer respite care, but the hours can be limited. If your family can’t cover all the care, you may need to hire home care attendants. Many agencies offer licensed attendants, and you can find them by searching state directories or looking up terms like “New York Home Care Agencies.” You can also ask friends who have hired home care privately and may know providers or groups of providers who work together. For Medicaid patients, some home care hours might be covered, but Medicare usually does not pay for this service.

Legal and Medical Paperwork

This is a good time to review your or your loved one’s estate paperwork. Most hospices require a DNR (Do Not Resuscitate) order to be signed, and this is a good time to review health care proxies, living wills, and wills and trusts. If you do not have an estate attorney, you can find one at FindLaw.com. You can also ask any lawyer you know and trust for a referral. Attorneys can sometimes recommend a Senior Move Manager, a funeral director, or an end-of-life doula.

Move to Facility

If you or your loved one cannot return home and needs to move permanently to a nursing facility or assisted living environment, you can start by reading reviews at SeniorLiving.org or A Place for Mom. Next, consider touring the facility and speaking to current residents and their family members. If the move is to an inpatient hospice, touring the hospice is also helpful. When you visit any facility, consider asking the following questions:

  • How many staff members are there per patient? Is a nurse available at all times? If a hospital visit is needed, can you choose which hospital to go to, or do you have to use the nearest one?
  • Does the facility have volunteers? What services do they offer?
  • Are there set visiting hours, or can visitors come at any time?
  • Does the facility have a residents’ council?

You can also hire a private caregiver in a facility if you want. Facilities may be able to suggest funeral directors and care agencies.

Senior Move Managers

If you are moving out of your home, you might want to hire a senior move manager. This title is protected, and anyone using it must meet the standards of the National Association of Senior and Specialty Move Managers, including insurance, ethics, and safety. You can find a directory on their website. They may also recommend estate attorneys or estate sale agents.

Estate Sale Agents

If you or your loved one is moving and have items you won’t be taking, and you think some might be valuable, you can talk to an estate sale agent to see if an estate sale is a good option. They usually take a percentage of the profits and will dispose of or donate anything that doesn’t sell.

If you think the items left behind have little or no value, you can contact a company like Junkluggers. They usually donate anything in good condition and dispose of the rest. Junkluggers may also be able to recommend senior move managers.

Funeral Directors/Home Funeral Directors

The best way to find a funeral director may be to ask people you know but you can also find a funeral director using the Find a Funeral Home search tool on RememberingALife.com.  There are many wonderful funeral directors and people love to recommend these service professionals with whom they’ve had positive experience.  If you live in a small community, you may already know and have worked with a trusted funeral director.  Although it may feel scary or too soon to begin to have these conversations, you’ll find once you or your loved one’s arrangements are planned that you’ll feel a great sense of relief.

Putting together a team like this can go a long way towards easing your anxiety at this truly difficult time.  It’s normal to feel alone or lost after a serious diagnosis and be unsure where to start or the first steps to take. The professionals listed above often work well together, and your community might even have a group focused on end-of-life care that can help with referrals. Don’t hesitate to reach out to any of them to talk about your needs and plans. They are there to help, so you can focus on what matters most right now.

The resources and organizations referenced in this post are provided solely for informational purposes and reflect the author’s individual recommendations. Any content or resources that are not produced by the National Funeral Directors Association (NFDA) or Remembering A Life do not constitute an endorsement. NFDA and Remembering A Life do not officially support, evaluate, or endorse any external resources, products, or organizations mentioned.