Hospice Care Insights

March is National Professional Social Work Month

Fri, 06 Aug 2010 11:51:58 GMT

Every March is National Professional Social Work Month. The White House officially recognized this month in 1984 as a way to call attention to a different social issue each year. Beginning in 2005, the month promoted a specific area of practice, along with general promotion of the profession, to educate the public about the role of social workers.

This year’s theme for National Professional Social Work Month is “Social Workers Inspire Community Action.” With hundreds of social workers in national, state and locally elected offices, including two U.S. Senators and six U.S. Representatives, this theme certainly holds some truth. In hospice alone, we aim to inspire the community to volunteer and consider hospice as an option for comfort and quality during the end of life.

Ironically, during my first year working in hospice, the theme for National Professional Social Work Month was “The Business of Social Work: Helping People Help Themselves.” This theme continues to be my mantra for why I do what I do.

I grew up wanting to help people. Always a skilled problem solver, I believed that with the right resources, people could help themselves through all sorts of situations. Becoming a social worker was a natural path for me, and even after nearly 20 years as a social worker, 11 of which have been as a hospice social worker, my passion for the profession remains strong.

During my undergraduate studies, I took an elective course on death and dying. This ended up being a life-changing decision because during that class I realized I wanted to work in hospice. At the time my friends thought I was crazy. After all, wouldn’t working with terminally ill patients be difficult? I knew it could be, but I’d always had the desire to help people when others were unsure of what to do. Helping hospice patients and their families address concerns – whether emotional, financial, or ethical – was what I knew I wanted to do.

Having been a hospice social worker since 1999, I’ve seen the profession grow and change, along with the public’s perception of what we do. Social workers started out simply as friendly visitors. While there’s still the misperception that that’s all we are, the truth is that we help people help themselves. We reach out, touch lives and empower others to do work that’s necessary and help people cope with difficult times in their lives.

In honor of this month, I encourage you to be an advocate for hospice, read more about social workers at the National Association of Social Workers’ Web site and learn more about social work offered by the caring professionals at AseraCare Hospice.

The Many Roles of the Hospice Social Worker

Fri, 06 Aug 2010 11:52:35 GMT

The social worker is an integral member of the AseraCare hospice team. As trained professionals, our first responsibility is to evaluate the needs of the patient and their family upon entering the hospice program. Going forward we represent the individual/family’s wishes at every hospice team meeting.

At the initial evaluation our goal is to identify where each of our patients and their families are emotionally. Using this as a starting point, we then join them on their journey and continue along at their pace. This is an amazing privilege that none of us take lightly. It is not our job as hospice social workers to impose any particular agenda. We are there to support the patient and their family’s wishes, and address their concerns be it financial, emotional or ethical. I like to describe it as being in the passenger seat, and holding up the map for them.

One of the many roles of the social worker is to “paint the landscape” of the patient and their family for the other hospice team members. I begin this process by asking each of the family members “Who is your Mom?” or “Who is your Dad?” This really helps open up the family members because everyone has a story, whether it’s an example of their loved one overcoming adversity or a wonderful personality trait. Additionally, it’s our responsibility to be aware of and sensitive to any social, cultural or religious ideals regarding the end of life process that is specific to each patient.

During the hospice process families often struggle with self care. They feel guilty taking time away from their loved one. We help them realize that they need to first take care of themselves so that they can be healthy, strong and able to then care for their loved one.

Creating a safe place for the patient and their family to talk about death is vital to the hospice journey. It is the social worker’s job to create a “safe container” for this discussion. Foremost, we are there to help support the patient and family in the areas of emotional care. For those patients or family members experiencing tremendous emotional grief, we may act as a grief counselor or hospice therapist. In some cases where there is a need for additional psychological counseling, we will put the patient or family member in touch with a licensed therapist specializing in this area.

Understanding the family dynamics surrounding the patient is an important role of the social worker. Oftentimes family members may disagree on the end of life decisions of their loved one. In these cases, we can help educate family members regarding any misconceptions or dilemmas they may be facing during this stressful time.

Many times it is just the presence of the social worker that offers a sense of support to the patient and family, because they know we are there to help.

Handling Grief Through the Holidays

Mon, 09 Aug 2010 11:03:45 GMT

"My husband died in April, leaving me with four children. This will be our first Christmas without him. The children and I are just starting to adjust to these new circumstances and now I am doing worse again. Not only do I dread the holidays but I am getting depressed and anxious because I don’t know how to approach this day with my kids, the in-laws, my folks, and even friends—it is all just too much."

Holidays—whether religious or secular—are especially painful for those who have lost a loved one. Holidays emphasize the absence of the loved one, they require energy while grief saps energy, the gaiety of public places increases a person’s sense of isolation and alienation, and the very nature of the holidays (for instance, “giving thanks” at Thanksgiving) seems impossible for a grieving person to embrace. There is the empty chair, the missing voice, the missing laugh, and the presents that aren’t given or received. For these reasons and more, the holidays—especially the first year—are often difficult times for those who have recently lost a loved one.

Therefore, I would like to offer you ten suggestions that might help you cope with the approaching holidays this year:

1. Don’t try to avoid the holidays: We can mentally try to ignore the holidays by pretending that they don’t exist but it takes tremendous energy to deny all of the input we see around us. Because the holidays are so ubiquitous, this is a recipe for disaster and a poor coping plan.

2. Plan ahead: Although your may experience some emotional pain during the process, planning ahead is a very good idea. Studies show that those who experience the most difficulty are those who have given little thought to the challenges they will encounter.

3. Leave the word “ought” out of the holidays: Consider scheduling a family meeting in which everyone can express his or her feeling and expectations. Make joint decisions. Be flexible with holiday traditions. Keep the traditions and rituals you want and eliminate the ones you don’t. Reduce the pressure by knowing that whatever you decide to do this year, you won’t have to do next year.

4. Let your family and friends know what you can handle: Share your feelings and your needs with your friends and families. Tell them what things will bring you comfort this year. Learn to be comfortable saying, “Sorry, not this year.”

5. Take care of yourself physically: Get plenty of rest—take naps if you like. Try to incorporate an exercise program into your day. Don’t overdo on the eggnog and sweets—you’ll simply feel worse later.

6. Allow tears and allow laughter: Accept ahead of time that there will be times when you are going to feel sad—carry extra tissues. Someone very wise once called tears the “gift of healing.” But also give yourself permission to feel good, to laugh, and even to have fun. Don’t feel guilty if your find yourself enjoying an activity.

7. Reach out spiritually: Keep in mind that painful losses can shake up religious beliefs. The questioning of faith is a normal expression of loss and consistent with later spiritual growth. Tell God about your anger and your questions—I’m sure God can handle it. Many people find consolation in meaningful spiritual rituals, religious services, and in the reading of Holy Scriptures—especially the Psalms.

8. Be kind to yourself: Decide what you really want to do and what can be avoided. Lower demands and expectations on yourself. However, if you find yourself declining all invitations, push yourself a bit to select some. Consider gift certificates if shopping is too much. Feel free to shorten or even omit your greeting cards this year.

9. Be kind to others: Consider doing something special or unexpected for someone who is in need.

10. Remember the true meaning of the holidays: Thanksgiving, Chanukah, and Christmas all celebrate hope, faith, and love and none of these is diminished with death.

The opening quote in this paper was not a fictional character or even one of my patients. It was my mother about thirty years ago. My father had died in a tragic car accident and I was the oldest of the four children. Yes, Christmas was not easy that year, but we survived and we eventually flourished again. With faith, so will you. AseraCare Hospice offers bereavement and help to those who are hurting—please don’t hesitate to give us a call.

Hospice: The Medical Home for End of Life Care

Mon, 09 Aug 2010 11:07:03 GMT

By now you may have heard about a healthcare model called the “patient-centered medical home.” It’s a concept that goes beyond just a physical place, but defines the people who provide healthcare and how it’s carried out. In a medical home the patient has an ongoing relationship with their primary physician who manages a team of healthcare professionals. This team is responsible for managing and coordinating all aspects of each patient’s care including preventative, acute and chronic care management, lifestyle and nutritional modifications and referrals to specialists. Care is coordinated by the team whether the patient is at home, a hospital or nursing home. The care provided is accessible, continuous and coordinated unlike the current system of healthcare provider networks in the U.S.

The term, medical home, was originated in the 1960s by the American Academy of Pediatrics (AAP), and then officially defined in the early 1990s. It began catching on in 2002, when the AAP adopted it as its standard of care, and continues to gain momentum in the medical community. What I find interesting is the concept and principles behind the medical home model are what hospice care has been about since its inception.

Like the medical home model, hospice care is a patient-centered and whole-person approach. Each hospice patient has a team of caregivers that include a doctor, nurses, home health aides, a nutritionist, social worker, spiritual counselor, bereavement counselor and volunteers. Because each team member has their own unique and valuable insight into the patient, patient care decisions are based on input from the entire hospice team, not just the physician. Coordination of care is achieved through a high level of communication and collaboration between our staff members. This includes weekly interdisciplinary meetings and daily contacts and updates throughout the day on the condition of our patients. We coordinate services with the primary care provider, medical equipment providers, and respite and nursing home care providers. We arrange for services with outside providers for consults when needed. And lastly we help arrange funeral services and actively participate in memorial services and bereavement counseling.

Other similarities between the medical home concept and hospice care are their goals to provide patients with around-the-clock access to medical consultation, and respect for a patient's cultural and religious beliefs. At each AseraCare Hospice facility we have a registered nurse on staff 24 hours a day, 7 days a week to answer questions, make patient visits, and to just be a comforting presence when the need arises. Additionally, at AseraCare Hospice, our staff is trained to listen carefully, ask questions, and respect beliefs, rituals or ideas that may be different from their own. We also utilize translation services when needed to provide the best quality care to our patients and families.

Hospice care epitomizes the concept of “the medical home” for end of life care, and additionally provides the caring “family” of staff members and providers which truly embody the spirit of any home.

Helping Families Talk about Hospice with Their Loved One

Mon, 09 Aug 2010 11:07:28 GMT

It is never easy to begin a conversation with a dying family member about hospice. But as a medical director with AseraCare Hospice, I have found that it’s best to do it before your loved one is in the final stages of life. The earlier you can have this conversation, the better the chances are for your loved one to be able to stay where they are, whether it’s at home or in an assisted living or skilled nursing facility. I have worked with hundreds of hospice patients and their families, and I believe an understanding of the following basic information about hospice can be very helpful in getting this difficult dialogue started.

When should hospice care begin?

The appropriate time to consider hospice care for your loved one is when they have exhausted all avenues to cure their illness, or have determined with their doctor that the negative effects of aggressive care for their illness outweigh the benefits.

Who starts the hospice dialogue?

Typically the patient’s primary care or regular physician is the first to initiate a dialogue with the patient about hospice care. Because they are the most familiar with the progression of the patient’s illness, I believe them to be the most qualified to recognize the signs when their patient is reaching the last stages of their illness. I feel strongly that dialogue is the operative word here. The goal in this situation is to present all options of care, and the final decision then rests with the patient and their family.

In my experience, it can also be a family member or even the patient who is first to bring up the idea of hospice. Many terminally ill patients intuitively know when their condition has deteriorated, and are wondering what the next step will be in their life’s path. I’ve been told by many hospice patients that discussing end-of-life options was actually a relief for them.

Hospice care myths and misconceptions

There are many myths and fallacies about hospice care that misinform and oftentimes prevent patients and families from turning to hospice care. I believe it’s important that these misconceptions are cleared up with your loved one, especially if they are unfamiliar with hospice.

A big misunderstanding about hospice care is that it means “withdrawal of care.” The opposite is true. In most cases we find that hospice patients find that their support system actually grows. Each hospice patient is attended by a hospice doctor, registered nurse, a home health aide, a social worker, pharmacist, nutritionist and volunteers. I’ve heard from many patients that they find they are getting more care with hospice than they were before. Hospice patients and their families need to be assured that help is no more than a phone call away, 24 hours a day, 7 days a week. Also, the patient’s regular doctor remains an important part of the hospice team thus ensuring continuity of care.

Finally, some people feel that hospice care guarantees an early demise. Not true. Hospice is intended to neither hasten nor prolong life, but to improve the quality of life that remains. Hospice allows the patient’s disease or illness to take its natural course. Interestingly, studies have shown that patients who sign up with hospice care can often live longer than those with similar diseases who don’t.

What to do once the decision to start hospice care is made?

It’s really very simple. Your loved one’s physician will contact the hospice agency and write an order. At AseraCare, our hospice staff will then contact you to set up an appointment at your location to initiate service. This can happen in just a few hours from when we receive the hospice order. As a hospice medical director, I feel strongly that the last thing a patient or their family should feel at this time is vulnerable or abandoned. It is my mission at AseraCare to make sure we fill that void, and preserve the dignity of death for our patients and their families. We believe there is no reason for anyone to die in pain or alone.

When Someone You Love Is Dying

Mon, 09 Aug 2010 11:07:51 GMT

With my years of experience working with hospice patients and families, I understand how difficult it is when someone you love is dying. You are likely experiencing many different emotions, and certain things that used to be simple may now seem complicated. During this time, it is important to nurture your relationship with your loved one as well as yourself. Below are some helpful steps to consider.

Acknowledge and Share Your Feelings. It is important to acknowledge your own feelings and then share them with your loved one. Trying to protect your loved one from the reality of the situation can create a wall separating you both from meaningful and precious conversations. This takes courage. If spoken feelings are difficult, start by saying “I know this won’t be easy for either of us…” Sharing feelings will leave you with precious memories and fewer regrets. Trust me.

Be in the Moment. Cherish the time that is left and try to be fully present in it. “Fully present” means you are listening, enjoying and treasuring every moment.

Concentrate on Your Loved One’s Wishes. It has been my experience that hospice patients are often reluctant to express their wishes. Now is the time to encourage your loved one to say what they want to say and do what they want to do. Nobody knows what tomorrow will bring—sometimes today is as good as it is going to get.

Dwell on Good Memories. Every relationship has its good memories and its not-so-good memories—we all carry regrets. Dwell on the good times. Let go of those things you can’t change, and try to fix things that can be fixed. Ask for and give forgiveness.

Eliminate Unhealthy Behaviors. One of the unhealthiest behaviors is to try to do everything on your own. Being a caregiver can be physically, emotionally and spiritually draining. It is a stressful undertaking. Having someone come in for a few hours can give you the time away you need to do chores or get some time for yourself. Be realistic: one day the time may come when you will be no longer be able to care for your loved one.

Final Plans. Starting a conversation about final wishes can be difficult, but it is necessary. Start your conversation with, “I know this is a hard subject to talk about, but I want to honor your wishes…” Here are some questions you need to ask: “Where do you want to spend your last days?” “Do you want to remain at home?” “Are our wills in order?” “Are there any financial affairs that need to be settled?” “What funeral and burial plans do you prefer?”

Goodbye. It is important to say goodbye. Sometimes this is done with words, and other times it is expressed by actions. Quiet times and simple gestures of affection can reflect the uniqueness of the moment and your love and concern. Once again, putting your feelings into words may be painful and tearful, but it can help your loved one say what needs to be said. This can provide closure and peace.
Your AseraCare Hospice team is always ready to help you during this challenging time—please don’t hesitate to ask your loved one’s physician.