Hospice Care

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A Mediaplanet Guide to End-of-Life Planning & Hospice Care

End-of-Life Care

Barbara Karnes, RN The author and award-winning endof-life educator shares the unique and unconventional ways people are honoring their loved ones’ lives


How to bridge racial divides in access to hospice care Find the right incontinence product for your loved one

An Independent Supplement by Mediaplanet to USA Today

Planning a Memorial Service That Reflects Your Final Wishes What are your final wishes? How do you envision people saying goodbye after you die? How do you want to be remembered?


hile these can be difficult questions to ask and answer, a discussion with loved ones about how you want to be remembered can help ensure your funeral, memorial service, or celebration of life represents the life you lived and gives family members and friends a meaningful opportunity to say goodbye. It can also eliminate the stress that often accompanies planning these types of services at the time of need, giving close family and friends the opportunity to focus on mourning. Getting started may be easier than you think. Talk with your loved ones Having a conversation about how you would like to be remembered is an important first step when planning your funeral. While it may seem awkward at first, people often find it gets easier as the discussion progresses. Some conversation starters include: @MEDIAPLANETUSA

• How do you want to be remembered? • What are your thoughts about how you would like to be laid to rest? (E.g., casket burial, cremation urn, natural burial, etc.) • What are your thoughts on having a viewing, either public for all mourners or private just for immediate family and close friends? • What are your fondest memories and how might we represent those at the service? • For what do you want to be known? A career accomplishment? Parenting? A favorite recipe? Musical talent? How might we represent that at the service? • Are there special readings or music you would like? • What faith-based elements and/or cultural traditions would you like incorporated? Involve family and friends You may have very specific ideas about your funeral, memorial service, or celebration of life, but family mem@FUTUREOFPERSONALHEALTH

You should never feel pressured to spend what you can’t afford.

Gail Marquardt Vice President, Consumer Engagement, National Funeral Directors Association bers and friends may have other suggestions as they think about what will help them move forward in their grief after the loss. Sometimes this can include differing opinions about whether a funeral

should even be held. Keep in mind that even if it’s your preference not to have a funeral, a gathering may be helpful to your family members and friends as they begin to grieve. Having an open conversation will give everyone the opportunity to have their voice heard so the service can be meaningful for everyone. Make it meaningful The things that make a funeral, memorial service, or celebration of life meaningful are the special touches that help mourners better understand the uniqueness of the life lived. Whether you include favorite readings or music, showcase a hobby, display photos, or serve a favorite recipe, there’s no limit to how you can make a service special and meaningful. Write it down Documenting your wishes and ideas helps ensure family and friends won’t forget any important details and will be very helpful when you sit

down to meet with a funeral professional. Meet with a funeral director A funeral director can ensure your wishes will be respected and adhered to when the time comes, so make this conversation as detailed as possible. This is also the perfect time to discuss whether prepaying would be advantageous. The decision to prepay is a personal one, and circumstances vary. Speak with your funeral director about your options to determine if prepaying is right for you. Be honest about your budget Meaningful funerals don’t need to be expensive, and you should never feel pressured to spend what you can’t afford. Having an open conversation about costs with your funeral director will help ensure the selected services are meaningful without causing financial hardship. For more information about starting this important conversation with your loved ones, visit RememberingALife.com. n



Publisher Joanna Tronina Business Developer Katie Konf ino Managing Director Jordan Hernandez Lead Designer Tiffany Pryor Designer Celia Hazard Lead Editor Jon Adams Copy Editor Taylor Rice Director of Content and Production Jordan Hernandez Cover Photo Julia Karnes All photos are credited to Getty Images unless otherwise specified. This section was created by Mediaplanet and did not involve USA Today.



Funeral preplanning can be a lasting gift to your loved ones. Here are five reasons why you should plan yours. Funerals commemorate a life well lived and provide a safe space for loved ones to mourn. But if we don’t plan for our final wishes and pay for them ahead of time, the burden of making those decisions (and costs) are passed down to loved ones. Preplanning has been available for decades, but because people tend to avoid conversations about death, most are unaware of how to start. According to the Funeral and Memorial Information Council, nearly 69 percent of adults over the age of 40 would prefer to plan their funeral or memorial service. When they do, our research shows 100 percent are satisfied with the decision and nearly 60 per-

Funeral Preplanning: What You and Your Family Should Know cent would recommend it to others. Here’s why. 1. Relieves emotional burdens When you preplan, you decide how you want to be remembered and honored. This answers many difficult questions for your family, which allows them the mental capacity to better support one another in their time of grief.

2. Saves your family money If you can, prepaying for your funeral offers additional savings as some funeral homes allow you to lock in certain costs. This may help offset price increases over time. If you can’t or don’t want to pay in advance, planning for these costs now can still help reduce your family’s financial burden later.

3. Avoids family conflict Without knowing your final wishes, well-meaning family members might disagree on your services. Preplanning allows you to inform your family of your preferences, potentially eliminating disputes. 4. G ives you control and peace of mind By preplanning your funeral,

you can specify what’s important to you — the type of services you’d like, burial or cremation plans, music, flowers, and more — and ensures that your final wishes are fulfilled. 5. Grow closer to your family Preplanning allows the people closest to you to participate in decisions about how to honor your life. If they’re resistant, explain the benefits outlined above so they know you’re planning with everyone’s best interests in mind. Remember, preplanning and paying for your funeral now can help minimize your loved ones’ worries so they can focus on celebrating your life. n Dean Lambert, Senior Vice President of Marketing & Communications, Homesteaders Life Company

Your final gift to a family well loved. Join The Love Always Project, a movement to promote end-of-life discussion, provide expert information and encourage people to preplan and pay for their funeral as the ultimate act of love for those they will leave behind. To learn more, visit lovealwaysproject.org now.



How Do You Want Your Life to Be Celebrated?


hen my stepfather died, we asked the priest that we had known for years to conduct the funeral. He apologized and said church rules were that he could not do a service in our church because it “wasn’t his church.” He didn’t have a church because he worked in a hospital. Ultimately, Don’s funeral was in a church that our family used to attend, but it was conducted by a priest we didn’t know and who didn’t know us. It was a cold, impersonal service — an official, traditional church “sendoff” that wasn’t particularly comforting. Five months later my mother died, and we were again considering funeral options. We definitely didn’t want a reoccurrence of Don’s less-than-comforting experience. My sister and I contacted our hospital priest once again and asked if he could do some kind of a service at the funeral home. He said yes, but that he would be on call that day and


may not be available at the last minute, so we should have a backup plan. Defying conventions We did just that. As a family we planned what to say, what to read, who should share, when to open it up for anyone to share. We were so pleased with our finished service that we told Father B. we didn’t need him for the service. We would do our own funeral at the mortuary and, if available, would he meet us at the cemetery for an interment blessing? He agreed. We — a family of daughters and sons, grandchildren, cousins, nieces, and nephews — shared our love and appreciation for the matriarch of the family. We did it our way, with our words and our stories. It was the best funeral I have ever gone to — and I’ve been to many. We were still grieving Don’s death when my mother Dorothy passed. Coming together with the purpose of planning a funeral service gave us the oppor-



In her book, “The Final Act of Living: Reflections of a Long-Time Hospice Nurse,” Barbara Karnes discusses advance directives and other topics that we should address before our final act of living.

tunity to channel our grief in a productive way. It gave us not just something to do together, but a creative outlet for the emotions we were feeling. Not only were we creating something of significance to us, but we were doing it together as a family and as a unit. Most of the time we lived in different states and had different lives. We were bonded by family, but we were separate in living. This was a way of coming together, of rekindling that love and unity that symbolizes family. Taking control You really can’t call what we did a home funeral since it wasn’t in any of our homes, but it was an outside-of-thebox funeral. So often in our grief, we do what is expected of us — call a funeral company, have a visitation, perform a church service, or have a memorial service with a picture of the deceased. That is what tradition expects of us. That is how, without thinking about it, we follow burial traditions.

In the last few years, I’ve been hearing about celebration of life parties held in restaurants or bars. Some people even have “before death funerals” where the person has not died yet and attends their own funeral to hear the honors given and celebrate their life. Additionally, in-home bathing of the body, keeping the body at home with no embalming, and in-home visitations are occurring. Choices in how the body is interred, cremated, or otherwise disposed are also broadening. What is the purpose of my writing this? To suggest that as part of our advance directives, we ask for the kind of service we would like. I’m writing this also to give us all permission to break the rules, to think outside the box, and to find a meaningful way of celebrating a life and saying goodbye. n Barbara Karnes, RN, award-winning end-of-life educator, 2018 NHPCO Hospice Innovator Award Winner, and 2015 International Humanitarian Woman of the Year

Preparing To Be a Caregiver for a Dying Loved One Angela Novas, MSN, RN, CRNP, ACHPN, Chief Medical Officer, Hospice Foundation of America

Kenneth J. Doka, PhD, MDiv, Senior Vice President for Grief Programs, Hospice Foundation of America

The Right Incontinence Product Can Change Your and Your Loved One’s Life Providing caregiving to a loved one is a profoundly meaningful experience. It also means juggling a lot of responsibilities, and if your loved one has incontinence, one responsibility is identifying the best product to use. Five areas to consider when choosing an incontinence product for your loved one are:

As gratifying as it can be to care for a loved one at the end of their life, caregiving can be a demanding and relentless job. Adequately preparing to be a caregiver for a dying loved one can help ease some of the burden and better equip you for the journey ahead. What type of care does a caregiver typically provide when taking care of a dying loved one at home? What type of impact does it have on that caregiver’s life? Not only do caregivers administer medication to help with pain and other symptoms, but they also provide meals, companionship, housekeeping, and assistance with daily tasks such as toileting and bathing. Hospice team members visit several times weekly to check on the patient’s condition and medication, but there is a misperception that at-home hospice provides aroundthe-clock care. In reality, this is rarely available. Caregiving is a demanding job, and the lives of caregivers can be impacted financially, physically, socially, and emotionally. They may need to take time off if employed; they may need to relocate temporarily; they may feel isolated; they may become physically and emotionally exhausted; they may have to care for both their own children and their elderly parent(s); and they may experience anticipatory grief as they observe the decline of their loved one. What type of support should that caregiver seek out?

It’s very important that caregivers realize the toll caregiving can have and that they practice good self-care. Social workers, who are part of the hospice team, can be great resources for caregivers who need advice about self-care and other helpful resources that may be available in the community. A wonderful asset that all Medicare-certified hospices have is trained volunteers. Family caregivers can ask their hospice if a volunteer can provide occasional temporary help or respite for the caregiver. It’s important for a patient to be comfortable and keep their dignity during end-of-life care. How can caregivers provide that for their loved one? Hospice care’s philosophy is all about making the patient as comfortable as possible while maintaining dignity. Caregivers can support that by extending that compassion and respect and advocating for their loved one’s wishes. A living will, or even a conversation about a person’s end-of-life care wishes, is important and can help maintain dignity. A caregiver can help support and advocate for the patient’s wishes if those wishes were made known before their illness progressed to the point where they are unable to advocate for themselves. Early advanced care planning is a gift we leave for our future caregivers as it allows them to honor our wishes for end-of-life care without the burden of having to guess what those wishes might have been. n

1. Dignity and discretion — Products that look and feel like underwear will provide more comfort. 2. Fast absorption — Products that prevent leaks and absorb quickly help keep the skin dry and healthy. 3. Odor control — The product should not allow odor to escape. 4. Breathable — A good product allows for air to flow to help promote skin health. 5. Easy to remove — Ability to easily remove the product is helpful when caring for loved ones. There are a variety of product solutions that address specific needs and severity levels, so options exist for everyone. Some options include: • Pads or guards — Discreet products used for light leakage resulting from sneezing, coughing, or moving around. • Protective underwear — A slip-on product that replaces regular underwear and fits under clothing. • Briefs — Constructed with side tabs for easy changes, these are a great choice for less mobile individuals. • Underpads — Soft, thin sheets with a waterproof barrier on one side, these are designed to protect surfaces from leakage. Ofek Devinney, Senior Marketing Manager, Attends Healthcare Products




f you have attended a funeral recently, it probably wasn’t anything like services you have attended in the past. There may have been a collage of photographs, a memorial video tribute, special mementos on display, storytelling from close friends or family, special life tribute ceremonies, balloon releases, or any other number of unique tributes. A funeral director’s priority is helping families commemorate the life of their loved one in the most meaningful way possible — including by using new trends, technologies, and innovations in memorialization. Unique locations When choosing a venue for your loved one’s service, you don’t have to hold it at a place of worship or the funeral home. You can select a location that reflects their spiritual beliefs, favorite hobbies, or interests. According to the National Funeral Directors Association’s 2021 Consumer Awareness and Preferences Report, 51.5 percent of respondents have attended a service at a non-traditional location. Reflect on where your loved one enjoyed spending time and consider having the service at a favorite restaurant, botanical garden, park, or art gallery. Ultimately, it is important to choose a site that you feel will offer a comfortable setting to welcome guests and help everyone begin the grieving process. Your funeral director may have relationships with local venues and can help arrange all the details, enabling you to focus on your healing journey.


Rethinking the Funeral

Your funeral director can help you find new and meaningful ways to honor your loved ones. Going green As Americans become increasingly dedicated to reducing their carbon footprint, people are exploring the ways they can be green in life and in death. According to NFDA, approximately 56 percent of Americans are interested in exploring green funeral options. When it comes to taking green to the grave, you can explore options such as sustainably crafted caskets and urns; burial in a green ceme-


tery; and using locally sourced, organically grown flowers. Funeral directors are the experts who can help families explore a wide range of natural funeral and burial options. Going virtual While most people find attending a funeral in-person to be the most comforting, many funeral homes offer webcasting or livestreaming options. Webcasting a funeral gives family members who are unable to attend in-person

the opportunity to participate in the service, whether they live in another state or even another country. During the COVID-19 pandemic, the number of funeral homes offering livestreaming options skyrocketed due to limitations on public gatherings. According to an NFDA survey, prior to the onset of the pandemic only about 15 percent of funeral homes offered webcasting options; during the pandemic, about 70 percent said they either started

offering webcasting services or plan to do so in the near future. Cremation options According to NFDA, 57.7 percent of Americans chose to be cremated in 2021, up from 40.4 percent in 2010. Given this growth, there has been a plethora of innovation in memorialization options for families that prefer cremation. There have been two significant alternatives to traditional flame-based cremation to emerge in recent years. Alkaline hydrolysis uses water, heat, pressure, and alkaline chemicals to reduce the body to bone. Natural organic reduction uses plant material and microbes to transform the body into soil that can be used to create a memorial garden. Because these are new options, your funeral director can advise you on what is legal in your state. Cremated remains can be used to create memorial jewelry one can wear as a tribute, incorporated into an artificial reef in the ocean, or scattered in the water via an urn made of salt or papier-mâché. There are many memorialization options available to families that choose cremation; a trusted funeral director can help families explore what is right for them. A memorable life tribute event should be as unique as the life your loved one lived. Consider meeting with a licensed funeral director to learn about the new options that might be available to your family. To learn more about your options, visit RememberingALife.com. n Jessica A. Koth, Director of Public Relations, National Funeral Directors Association


What Will Your Last Gift To Your Loved Ones Be? People have been giving gifts for centuries. Some are cherished, others are just for fun, and some were never desired in the first place. But if you had one last gift to give your family, what would it be? Comfort? Security? Peace of mind? Millions of Americans buy life insurance for these very reasons, but some people are priced out of protection due to poor health or older age. 1 “How Much Does a Funeral Cost?” Lincoln Heritage Funeral Advantage, 2021 2 Internal Data, Transamerica, 2022

“We see a lot of clients who aren’t aware they can get a plan that not only meets their budget, but would be simplified issue,” said Jordan C. Smith, a partner at North American Senior Benefits. Many people would rather watch paint dry than think about the inevitability of death. But it’s part of life, and dying can be expensive. The average funeral costs between $7,000 and $12,000.1 Then you factor in outstanding debts, Riders are optional, may be available at an additional cost, and may not be available in all states.

recurring payments such as mortgages and bills, and future planned expenses, such as college costs for children. Would your family be able to stay afloat with you gone? Thankfully, there’s an option that almost anyone can be approved for. “You’d be surprised to know just how few people are aware of final expense life insurance,” said Shawn Meaike, president of Family First Life. Life insurance products are issued by Transamerica Life Insurance Company, Cedar Rapids, IA or Transamerica Financial Life

With final expense, there’s no medical exam, no blood or urine tests. It gets you covered faster than traditional life insurance, and your premiums will never go up or change. “The Final Expense Solutions Portfolio” from Transamerica even comes with nursing home or terminal illness benefits (just in case), and more. Experience is everything in insurance. With over 15 years in the final expense business, Insurance Company, Harrison, New York. Transamerica Financial Life Insurance Company is authorized to conduct business

Bringing Hospice Benefits to the Black Community In 2018, about 82 percent of hospice patients were white, while only 8.2 percent were Black. Heart and Soul Hospice’s Director of Clinical Services Keisha Mason discusses this disparity and how to bridge racial divides in access to care. In your experience, what is keeping the Black community from making the transition to hospice care? The reluctance towards hospice has been twofold. First, there’s a general lack of knowledge of what hospice entails and how it can benefit their loved one. Many have no clue that the benefit is even available to them.

The second reason is poor previous experience with hospice care. Many have the belief that hospice is a place that their loved one is moved to at the end of life to die. They think that once going to that place, they are given medication and die soon thereafter. This has been the experience of some in the past. It’s hard to reassure someone with the past experience that this is not what we do.

What are some of the benefits of hospice care for the patient and home caregiver? Death is going to occur; there is no getting away from this fact. How this death occurs is what we specialize in. We make sure that the death is dignified and comfortable. We surround the patient and their family with a team of nurses, aides, social workers, and volunteers that will pro-

vide them with support, education, and resources during the death process. We also provide equipment, supplies, and medications that are delivered to the home. What changes can the hospice industry make to reach more families in the Black community? The hospice industry must realize that most commu-

Transamerica has established itself as a leader in this area. In 2021 alone, the company paid out over $143 million in final expense claims to its customers.2 What will be your last gift to your family? To learn more about final expense life insurance or to find a professional in your area, scan the QR code with your phone. n Transamerica

Scan the QR Code to learn more.

in New York. Transamerica Life Insurance Company is authorized to conduct business in all other states.

nities of color are usually multi-generational units. The elderly family members are living with and cared for by their children or grandchildren. Traditionally, hospice has looked at the hospitals as the referral sources. However, by the time these communities take their loved one to the hospital, they may have long been hospice appropriate. We need to do a better job at community relations. The industry also needs to do a better job at recruitment of nurses, aides, social workers, chaplains, and leadership of color. Representation matters. We still have a long way to go to understand that disparities in healthcare exists in all areas. n Keisha Mason, BSN, RN, Director of Clinical Services, Heart and Soul Hospice