THE FAMILY CONVERSATION #5

In addition to advance directives, families should assemble a list of other key documents and information, listed in Chapter I of this Navigator, “Putting Key Documents in Place”. Review these items, make sure you know where this information is stored, and that it’s readily accessible to key family members.

In my family, we began to explore palliative care when Mom was slowly losing her ability to speak. She still enjoyed music of all types, especially musicals. We would sing them to her, and she tried to sing along. She also seemed to enjoy being read to and looking at family pictures. Despite her difficulty speaking, she could hear well and would mostly answer, “NO!” when we asked her questions like “Would you like to go outside?”

Whenever possible, it’s important for care recipients to participate in their own end-of-life care conversations, as we did with Mom, long before they reach this stage. Such conversations are part of a larger movement in the medical community known as “Goals of Care Discussions”—discussions that incorporate not only medical treatments and interventions, but a patient’s personal goals, including where they want to be and how they want to live in the time they have remaining.

There may be important non-medical, end-of-life issues your loved one might want to address—how to engage emotionally and spiritually with their world, and what kind of legacy they want to leave. And if your parents have not had previous conversations about their funeral and burial arrangements, families should clarify their wishes, if possible, to avoid conflicts when they pass.

It’s important for care recipients to participate in these end-of-life care conversations, as my brothers and I did with our mom. Such conversations are part of a larger movement in the medical community, known as “Goals of Care Discussions”—discussions that incorporate not only medical treatments and interventions, but a patient’s personal goals, including where they want to be and how they want to live in the time they have remaining.

When evaluating palliative or hospice care, a quick review of YouTube videos by experts such as Drs. Atul Gwande (“How to Talk End-of-Life with a Dying Patient”) and Ira Byock (“Celebrating People Out of Life”) may prove useful. Talk to your loved one’s doctor: If it seems likely that your parent will die within the next six months, you should consider starting palliative care or hospice care.

Even with your parents’ advanced directives in place, family caregivers need to be prepared to step in on behalf of their parents, engaging with doctors and other healthcare providers.

This happened several times with my mother. In one instance, Mom had been in the hospital for an injury and was discharged to a local rehab facility for recovery. When we visited her that evening, we discovered that she had been placed in a dementia unit because there was a shortage of beds in the main building. There were a number of agitated, screaming patients near Mom, which clearly upset her, and to calm her down, the attending medical personnel had given her strong medications. We were told that she would be moved to the main unit in the morning, but instead, we got a phone call a few hours later saying that she had been taken to a nearby hospital.

There, we discovered that Mom was extremely lethargic and non-responsive. When we asked a doctor why she wasn’t given more medical attention—she needed immediate care, including food and fluids—we were told that she had a DNR. We responded angrily that “Do Not Resuscitate” did not mean “Do Not Treat.” Mom quickly received our requested treatment, and we got her discharged to another rehab facility, but we were left with a sobering realization that we couldn’t take anything for granted. We had to remain a vigilant advocate for Mom.

When my family began looking at what care was appropriate for Mom at this point in her life, we quickly learned the major differences between palliative and hospice care.

Many private insurance plans, as well as Medicare and Medicaid, cover a range of palliative care services in the hospital, in rehabilitation and in skilled nursing or hospice facilities. (Medicare and Medicaid don’t use the word “palliative,” but the services are the same.) Medicare Part A recipients may be able to receive palliative care at home. Medicare Part B may cover some services and supplies to treat the patient’s disease.

Hospice care is also covered under Medicare, Medicaid, and most private insurance plans. If a person qualifies for hospice care, they can get medical and support services, including nursing care, medical social services, doctor services, counseling, homemaker services and other types of services.

To receive the Medicare Hospice Benefit, your loved one must have Medicare Part A coverage and meet these provisions:

Typically, a family member serves as the primary caregiver and, when appropriate, helps make the decision to seek hospice care for the terminally ill individual, after talking with other family members and doctors. To find a suitable hospice provider, caregivers can consult the patient’s doctor, as well as find lists of potential providers from various organizations or government agencies (See Palliative and Hospice Care Resources).

Hospices aren’t required to be certified or accredited, but many obtain accreditation from organizations such as the National Hospice and Palliative Care Organization and other groups that set standards for participating hospices. Medicare only covers hospice care if the provider is Medicare-approved. Original Medicare will cover everything an individual needs that’s related to their terminal illness, as well as health problems that aren’t related to that illness.

Once a person’s hospice benefit starts, the hospice team develops a care plan that meets each patient's individual needs for pain management and symptom control. Family members should actively confer with the hospice administrator in choosing the team and deciding what plan would be the best fit for both caregivers and their care recipient. The interdisciplinary team usually consists of the patient’s personal physician; hospice physician or medical director; nurses; home health aides; social workers; counselors or clergy; speech, physical and occupational therapists, if needed; and trained volunteers.

Members of the hospice team make regular visits to assess the patient and provide additional care or other services. Hospice staff are on call 24/7. Among their responsibilities, the team:

Patients always have the right to opt out of hospice care at any time for any reason, for example, if their health improves. But even if a patient lives longer than six months, they can continue to receive hospice care, as long as a hospice doctor or medical director recertifies that they’re terminally ill.

Hospice care is designed to provide comfort for terminally ill patients but also support family caregivers. Hospice provides help that may be difficult to get at a time when your loved one needs special care. It may require caregivers to learn new tasks, accept a different plan of care and reflect on their family’s values during a deeply personal stage of life. Hospice programs not only offer counseling during a loved one’s illness but provide optional bereavement support for a year after the death of the family member.

In the case of my own family, palliative care for Mom eventually shifted into a formal hospice care program, following extensive conversations with my brothers. Mom was no longer able to feed herself and after a minor stroke, she could only consume pureed food. Working with Mom’s home-care doctor and a strong Medicare-certified hospice team, we created a care plan that focused on keeping Mom’s as comfortable as possible, while honoring the provisions of her Living Will—not to keep her alive through artificial means, like a feeding tube. After consultation with her doctor, we reduced the number of medications she took. Why continue to administer cholesterol medication, we asked, if the side effects might be worse for her than the benefits? 

Although she had great difficulty communicating, we continued to talk with her, read to her, play her favorite music, hold her hands and gently massage her. In the end, Mom passed away peacefully at home, as she wished.