God gave burdens; he also gave shoulders.
THE FAMILY CONVERSATION #5
Planning the Final Chapter with Dignity, Comfort and Care
The end-of-life journey is uncharted territory for many families. At the same time, this challenging transition is also part of life’s natural journey, and if we address it with care and openness, it provides us with a unique opportunity to support and honor our loved ones.
One of the first tasks for caregivers is to help their loved ones choose the most appropriate medical care for them. These options may include palliative care and eventually, hospice care. In short, here’s the distinction between the two types of care:
While making decisions about your loved ones’ medical care is an essential task, it’s also part of a broad range of issues that require family conversations at this time:
Your loved ones should prepare a well-executed letter of instruction for their caregivers that could save them hours, if not days or weeks, fulfilling their many responsibilities during this emotional period. Make sure the letter includes everything from information about advance directives, to telling them where important documents and keys are kept, to whom should be informed about your loved one’s death. They don't need a lawyer to make this informal document, just some time and forethought.
If undertaking such instructions seems too daunting for your loved ones, there are programs that can provide organizing tools for modest fees. Two commonly used programs are:
Advance Directives (Update)
Your loved ones should review their health care proxy and living will. These documents are often completed years earlier during the planning stage of caregiving, so make sure they’ve been brought up to date, as needed, and are easily accessible. (See Advance Directives in Chapter I of this guide).
If your loved one has had chronic health conditions, they should also consider an important document known as a MOLST (Medical Orders for Life Sustaining Treatment). A MOLST is intended to honor a patient’s preferences for end-of-life care and document these preferences for health care professionals and facilities.
In completing a MOLST, your loved one should have conversations with family caregivers, their health care agent and doctor, to review possible treatment options and instructions, such as “Do Not Resuscitate Orders” (DNR), or “Do Not Intubate Orders” (DNI), which specifies one’s wishes to receive or refuse certain treatments under certain circumstances. Along with a health care proxy and living will, such instructions enable each of us to take personal responsibility for end-of-life decisions while also reducing the anxiety of caregivers asking themselves if they made the “right” decision on our behalf.
The MOLST form should be printed on bright “pulsar” pink, heavy stock paper. Hard copies of the card stock pink form (with all four pages printed landscape/double-sided on a single 11-inch x 17-inch sheet folded in the middle) can be ordered using a form that can be downloaded from the New York Department of Health website (www.health.ny.gov/forms/doh-5003.pdf). If your loved one is living at home, the form should be in a readily visible location, should instructions suddenly be required for EMS workers or health care professionals.
In hospitals, hospice, and nursing homes, the MOLST form may be used to issue any orders concerning life-sustaining treatment. (Under State law, the MOLST is the only authorized form for documenting nonhospital DNR and DNI orders.) A signed MOLST form should be transported with a person if they travel to different health care settings. The medical orders need not be re-issued by a patient's new health care provider but should be reviewed and may be revised by a physician, nurse practitioner, or physician assistant when the patient transitions to a different setting and when the person’s preferences and/or medical conditions change.In addition to the MOLST form itself, the New York State Department of Health has developed legal requirements checklists and frequently asked questions. The checklists are intended to help providers satisfy the complex legal requirements associated with decisions concerning life-sustaining treatment, such as securing informed consent to the medical orders from the proper person and making the clinical judgments necessary to support orders withholding or withdrawing life-sustaining treatment. The MOLST form, along with general instructions, checklists and an extensive FAQ document, is available on the department of health website (www.health.ny.gov; search for “MOLST”).
Vital Information Checklist (Redux)
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.
If your parents have not expressed their intentions about their funeral and burial arrangements, the family should try to discuss them to avoid conflicts when they pass. Pre-planning funeral arrangements relieves a lot of stress; there can be chaos following the death of a loved one, rushing to plan in the midst of grieving. Pre-planning takes the guesswork out of the process and ensures that your loved ones are remembered and honored as they wished.
Conducting a funeral or memorial service is an important part of the caregiving process, an important opportunity for family and friends to grieve, share memories and celebrate a life. “Find out what kind of funeral services your loved ones want and involve those who will be most affected by their death,” say Crystal Gonzalez, a Family Service Counselor with Dignity Memorial O.B. Davis Funeral Homes in Centereach. Make sure there are clear directives about cremation or burial, the type of service and location, mortuary, pall bearers, religious traditions, last wishes and any special instructions, like organ and tissue donation, adds Crystal, who is also Sales Manager for Dignity Memorial—Long Island.
Funeral expenses can be pre-paid, which may reduce costs for the family (The average cost for a traditional full-service burial in New York is $7,834, according to www.funeralocity.com). Pre-paid funeral arrangements can be made with a funeral director and can be as detailed as you please. Families have the right to buy only the services and products they want, and the money can be protected in interest-bearing escrow accounts, often locking in costs. The account may be transferable to another funeral home, should you move or the home you originally worked with is no longer providing service. And if your loved one is a veteran, their spouse or family member may be eligible to receive an allowance or partial reimbursement for the burial and funeral expenses they have incurred.
Supporting the End-of-Life Journey
Families are often reluctant to talk about the end of life of their loved ones; they push it under the rug, in denial or in anxiety and fear. People don’t know what to say, so they say nothing.
When a terminally ill person enters this period, they generally go through three phases, says Susan Capurso, a Certified End-of-Life Doula on Long Island:
The role of a doula is to help bring calm and peace to the end-of-life journey, supporting and guiding an individual and their family holistically—emotionally, practically, and spiritually. Doulas work wherever their patients are—at home, in hospitals, nursing homes or hospice facilities—and their services are intended to complement those of palliative and hospice care providers.
Doulas may offer a wide range of services to individuals and their families, such as:
Susan, the owner of East End Doula Care (www.Susancapurso.com), offers one-on-one guidance sessions, workshops, online courses and books, including “Coming Full Circle: 100 Tools, Tips & Ideas That Will Make a Difference at the End of Your Life.”
“There are things that can be put in place to help a person come full circle and bring some peace into their life before they go,” says Susan. “This time is about dealing with mortality and handling the transition better. It’s about being mindful, taking charge of this journey, and celebrating this journey at the end of life.”
Doulas may specialize in different areas, and Susan is a “legacy specialist”—that is, she helps people create a personal legacy so current and future generations of their family will be able to remember and cherish them for who they are. Through her “Story of Me” project, Susan works with individuals, prompting them to write remembrances, thoughts and feelings, record their stories in audio and video, make scrapbooks, visit places with meaning to them. The end product is a creative and/or spiritual legacy, a gift to one’s family that is as important as your material assets.
There are other organizations and services too, that can help caregivers and their loved ones preserve these kinds of stories, such as Storyworth (www.storyworth.com) and Blake Brewer’s Legacy Letter Challenge (www.legacyletterchallenge.com). And of course, putting together a family legacy does not have to wait until your loved one is terminally ill. Many families begin piecing together photo albums, videos and digital archives many years earlier.
But it’s the stories and reflections of our loved ones that offer a unique dimension to their personal history, beyond the family’s genetic ancestry. They tell our children and grandchildren who were, offering a connection to a past that helps them understand who they are today. And as Susan points out, “Once your loved one is gone, their stories are gone with them.”
Palliative and Hospice Care
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.
After a Loved One Passes
Family caregiving doesn’t end with the funeral of your loved one. Even if an estate plan is in place, and vital financial and legal documents have been assembled, there still may be much work to do. Especially after caring for your loved one through illness or infirmity, it can be overwhelming to manage their affairs after death. Grief can put us in a fog, so it’s important to stay organized, prioritize tasks, and learn what you are—and are not—responsible for.
Your loved ones’ will or trust often lays out how personal property is to be distributed to their family, but frequently there are singular items that just can't be divided up. The legal responsibility for allocating these items usually falls to the executor, but this can be a tricky task and perhaps not the best way to do it, unless family members really get along. This process is often the final, emotional act for family caregivers, who may need to find creative ways to complete this process without rancor or recriminations.
One inspiring example of how to do this was related to me a few years ago by a long-time colleague, elder law attorney Ron Fatoullah. When Ron’s father passed away, dividing the estate was a fairly straightforward deal, except for one thing: a Patek Philippe watch. His father had once taken a trip to Switzerland and decided to splurge and buy the watch. “He absolutely loved it. He wore it all the time and didn't wear any other jewelry except for a wedding ring,” Ron told me. When his father passed away both Ron and his brother wanted to wear the watch. “We looked at each other and said, ‘What can we do? There’s only one watch. We both can't have it.’”
What they decided was to share the watch. One brother would wear it for a full year, then there would be a “changing of the guard,” and the other brother would get to wear it for the next full year. “My Dad was the most amazing father anyone could have,” Ron says. “We both cherished him, and that's how we worked it out.”
But sometime things aren't that easy. There are one-of-a-kind objects, and ultimately, the best way may be for adult children to resolve this challenge is conduct a round-robin selection process. The children draw lots as to who gets to pick first, who gets to pick second, and so on—and then, you rotate the order.
In fact, that’s the way we divided up our parents’ personal effects after Mom passed away several years ago. We knew that Mom wanted to distribute items fairly and equitably among her four sons, so we created an inventory of all their personal property, listed by category, including her many pieces of painted porcelain, ornamental bookends, furniture and tables, yard tools and equipment, lamps. We donated several items to charity and separated out what we would sell in a yard sale. Then we created a list of all the items we felt had some emotional or material value to family members.
One afternoon, we held a round-robin selection process: the oldest son first, followed by the other sons in chronological order; then reversing the process, with the youngest son picking first; then the second and third sons picking first, rotating the order through several rounds until all the items were selected. Of course, there were a few items that more than one of us wanted. But in the end, we all came away feeling that we had fairly distributed our parents’ personal legacy, and that we each had some cherished mementos of those who cared for us before we cared for them.