Are you a teacher, school administrator or school support personnel? If so, think back over the past three years. How many times has a student in your school lost a parent, sibling or significant family member? How many times has your school community lost a student or a teacher? Chances are fairly high that every single one of you could think of at least one instance where grief reared its ugly head in your school.
Now, think back to your professional training experiences. How many courses did you take about the psychology of grief, common grief counseling interventions or how to support grief inside the classroom? How many grief courses were required for your professional licensure? For most of you, the answer to both questions is probably "none."
The statistics regarding children's grief in schools are staggering. According to Comfort Zone Camp, one out of every 7 Americans will lose a sibling or a parent before the age of 20. That's 15% of children under age 20. Yet, it's not unusual for teachers to feel completely unprepared when it comes to supporting a grieving child in their classroom. Teachers are with our children 5-6 hours each day, 5 days each week, 9 months a year. They are the frontlines of support in the classroom for grieving children yet we arm them with few resources and guidance on what to do and what not to do.
For many people, things that make us uncomfortable or cause us to feel inadequate and unprepared often become things we avoid. It seems like this holds true for many teachers and schools across America. Grief is not discussed in many classrooms. Most classroom libraries probably do not have books on death, loss or grief. Group discussions after a death strikes a classroom are likely a rarity. Teachers surely make referrals to the school social worker (if one exists in the building) and figure that it's probably best to not mention the loss to the grieving child or to their peers. After all, they don't want to make their students hurt even more. But, the silence many grieving children receive from their schools following a loss can be deafening.
Below are some tips to help teachers and districts begin to improve their ability to provide support to grieving children within the classroom. Remember, nearly 15% of your students are likely to experience a significant loss before they reach the age of 20.
How to Support Children’s Grief in the Classroom
1. Reach out
Perhaps the most important suggestion I can offer is to take an active role. When you hear of a child's loss, reach out. You will not be inconveniencing the family. You will not be a bother to them. Your genuine concern and offer of support could be something that is remembered forever. While you cannot take away that student's loss, by reaching out you are telling them and their family that they are important to you and that they are valued members of the school community. You don't have to offer anything - just your acknowledgement of their loss and validation of their worth is important enough.
2. Share accurate information
In today's super connected society, news travels at lightening fast speeds. One Facebook or Twitter post can notify a whole community of a death in just a few moments. Sometimes the information that gets circulated is based on speculation and is inaccurate. One of the best ways to address this issue is to formally share the information with the correct details. Ask the student's family what information they would like shared and if they would like someone from the school to share it with the school community. Imagine the stress a student may feel returning to school but not knowing who knows about their father's death. Who do they have to tell? What do they need to say? When someone from the school takes that pressure away from the family and child, they take away what can be a very heavy burden.
3. Involve peers
No matter the grade, one of the most important aspects of any child's school experience is their relationship with their peers. When a student loses a family member, it is important for their peers to not just be notified but to be provided with an opportunity to explore the loss themselves. Perhaps their friend's now deceased parent used to volunteer on Field Day or helped out in a carpool or came to school on the student's birthday each year. For many children, seeing a peer lose an important family member can also trigger worries about the possibility of losing their own loved one. That math unit can wait a day while classrooms take an hour to allow the peers to ask questions, support each other and perhaps even identify a way to help their peer.
4. Formally commemorate
Most schools value formal ceremonies. School concerts, school plays, pep rallies, academic assemblies, holiday gatherings and graduations are common occurrences in schools. Why? Because they bring the community together, reinforce the concept of interconnectedness and allow for shared experiences. Schools should not be saving these formal gatherings only for positive moments. During times of grief, schools can find a way to bring everyone together to commemorate the loss of a member of their own community. Some schools plant a tree, install a bench or hold a naming ceremony when the community experiences a significant loss. Formal commemoration activities can also be done on a smaller scale. Perhaps the student's classmates could put together a book of poems, cards or pictures that the students create and then give the book to the grieving child and family (teachers and parents should proof it first though!).
5. Be flexible
For many children, returning to school provides them with security, structure and safety. It is not uncommon or abnormal for a child to want to go to school the very next day after they have had a loss. School can provide grieving children with an opportunity to be distracted from the loss and sadness for short periods of time. It can allow them to feel normal and feel a connection to the life had prior to the loss. But, for many students, there are moments in the school day when they may find it challenging to focus, attend to a task or even sit still. Be flexible with children, regardless of their age, when it comes to their coursework after the loss. Accommodations such as extending deadlines and allowing extra bathroom breaks will probably not ruin the child academically. However, setting rigid standards, being inflexible or accusing children of taking advantage of their grief situation may set children back academically, socially and emotionally. Yes, I am even suggesting applying this same flexibility to teens.
6. Resist the urge to share and compare
While you may have had a similar loss as a child, it is not always helpful to share such experiences with a grieving child. It can potentially minimize their experience and loss. The same holds true to statements like "I lost my Dad too. I know how it feels." The truth is that no two people experience loss and grief in the same way. Avoid sharing and comparing your own experiences and focus instead on providing genuine support.
7. Anticipate re-grieving
Many adults who have experienced a loss can appreciate that there are certain times of the year where their grief gets re-triggered. Anniversaries of the death, certain holidays and birthdays are all common events that can cause a surge in grief. Children experience this same phenomenon but they also have an added layer of complexity in their grief. As children develop cognitively, emotionally and socially, they begin to understand and view their world differently. They start to apply different questions and interpretations to their world and to any losses they may have had. So, while your 6th grade student may have lost their sister in the 2nd grade, they may re-grieve that loss in completely new terms as they begin to see the world through 6th grade eyes. For them, it could feel as if the loss is brand new.
8. Track community losses
Schools and school districts should consider tracking data around grieving children - even if it is only for certain losses such as parents or siblings. Tracking this data will allow districts and schools to identify patterns that are out of the ordinary. For example, if your small elementary school has 9 students who have lost a parent in a span of 2 years, your school may want to explore the possibility of offering more specific resources for those students and families as well as the rest of the school community. That's a lot of grief to be experiencing for one school in one short period of time.
9. Support the staff
Let's face it, being a teacher is one of the hardest jobs out there. Teachers are tasked with an immense amount of goals, objectives and responsibilities without an immense amount of funding or resources. While grief can enter the classroom through the experiences of the students, it can also enter the classroom through the experiences of the school staff. Teachers, administrators and staff members all also encounter loss and may be actively grieving alongside the grieving children in the school. Explore ways to come together to support each other as professionals.
10. Provide support over time
There is no timeline for grief. There is no such thing as closure. When people lose someone important to them to death they don't ever get over it. Grief is with them forever and while sometimes it's a silent companion, other times it's a loud, unruly, disruptive companion who is difficult to manage. Just as grief will exist over a long time frame, so too should the support from the school. Check in frequently with the student to see what they need, not just in the days and weeks immediately following the loss but in the months and years after the loss as well.
If you are interested in receiving additional training and education on the topic of supporting children's grief in the schools, be sure to visit Children & Grief: Guidance and Support Resources from Scholastic/New York Life for helpful resources such as lesson plans, handouts and training modules. Also explore the website for the National Alliance for Grieving Children for additional training resources and to identify children's grief centers in your area. If you are in the Massachusetts area and would like to arrange for a grief/bereavement in-service in your school, please send an email to me at email@example.com for more information.
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It's that time of year again. Dunkin Donuts and Starbucks have rolled out their festive holiday cups. Stores are filled with holiday decorations and pine tree scents. Radios have begun playing holiday music. Santa has already arrived in some locations for photos. Families are starting to post and send their Christmas cards (not mine though - we can't get our act together that quickly!). Turkeys are on sale and people are planning out their pie baking schedule. All around us are the sights, sounds and smells of the holidays. Such a wonderful and joyous time of the year. Right?
Not for everyone.
For many people, the winter holidays are excruciatingly painful. Either they have recently lost a loved one and this will be their first holiday season without them or the holiday season is a sad reminder of their lost loved one. When they see all the happy, smiling faces on Christmas cards, they are reminded that their loved one won't be on any cards this season. That adorable, heart-warming commercial with the cheerful family seated around the Thanksgiving dinner table makes them realize there will be an empty chair at their own Thanksgiving table this year. While perusing their local Target, a holiday sale banner catches their eye and they see "the" perfect gift for their loved one, forgetting for just a split second that there will be no gift exchange with their lost loved one this year.
Maybe you know these people. You probably do. Think about your friends, your family, your coworkers. How many of them lost someone within the past year? How many lost a very important person ever and might ache for them throughout the holiday season?
Maybe this person is you and you find yourself dreading the holiday season.
For those of us living in parts of the country where the sun sets earlier, leaving us in darkness from 4:30pm on, the nights can start to feel painfully long and lonely this time of year. The colder weather forces us indoors, encouraging us to hibernate. But if you have recently lost a loved one, the longer nights, colder temperatures and holidays on the horizon can all add up to a deep, dark sadness.
Whether you are the one hurting this holiday season or you know someone for whom the holidays are difficult, there are some tips to help you manage the grief that is often so palpable this time of year.
How to survive the holiday season when you are grieving
1. Honor your loved one
So often our society pressures us to "move on," "heal," "find closure," or "let go" of our loved ones. Those messages are wrong. We shouldn't be letting go; we should be finding new ways to hold on to them, hold onto our memories of them and find a new way to feel connected to them. Spend some time thinking about how best to honor your loved one this season. It could be as simple as lighting a candle or hanging a special ornament on your tree. Maybe it's volunteering to feed the homeless, host a toy drive for children or sponsoring a family for Christmas. Go to their favorite restaurant. Cook their famous side dish. Wear their necklace. Stop trying to forget them. Instead, embrace your memories of them. Talk about them. Say their name and say it often.
2. Allow yourself to feel
It's amazing how connected our senses are to our emotions. Just a certain smell in the air or a song on the radio can take us back to another time in our life. The holidays can do this too. Don't be surprised if you find yourself more emotional than usual. If you need to cry, cry. If you you need to express some anger, take up kickboxing or scream into a pillow. Seriously. Let out your emotions. If you try to bottle up all of your feelings, they probably will escape at the most inopportune times - like when your child spills his glass of apple juice, someone cuts you off on the highway or that lady in front of you tries to sneak 13 items into the 12 item or less express line at the grocery store. Feeling all of your emotions doesn't make you weak; it makes you human.
3. Be social...or don't
It's normal to not want to celebrate at all during the holidays after a loss. Seeing so many people laughing and filled with joy can feel surreal when your world is still spinning uncontrollably after a loss. If you don't want to attend some of the holiday functions, don't. You know yourself best. One word of caution, however: isolation after a loss can lead to depression and complicated grief. Sometimes it's good to force yourself to socialize, just a little. When you do accept an invitation somewhere, though, give yourself an escape route to use if things suddenly feel too much.
4. Speak up
For many people, their support networks kick into hyper drive following a loss. Phone calls, texts, visits, casseroles and cards are pouring in almost non-stop immediately following the death. But after the funeral, those types of support can suddenly come to a crashing halt. Do people suddenly stop caring? No. Many people are uncomfrotable around grief and simply don't know what to say, what to do or how to act. So, they avoid. Don't be afraid to tell your support network what you need. It's ok to ask for specific things like invitiations to social events, regular phone calls, a visit, staying away for a while and even practical help with things like errands and child care. In most cases, your support network will be delighted to have been given a specific way to be useful and supportive for you.
5. Be kind to yourself
Watch for negative self-talk and talking down about yourself. Thinking or saying things like "I shouldn't be crying like this" "This shouldn't bother me so much" "What's wrong with me" only bring us down more. Be kind and understanding to yourself. Grief doesn't go away. It's always there inside you. You carry it around with you and sometimes it's heavier than other times. It's normal and it's ok. Recognize that it is normal for this time of year to be more painful and challenging and also look for the things and people that bring you hope. Do things that make you feel good and nurture yourself. Yoga. Walk. Exercise. Journal. Read. Play music. Listen to music. Start therapy. Attend a support group (see the end of this article for a link to some groups). Remember that you are human and deserve compassion - especially from yourself.
A note about children
Often, children know far more than we think they do and they become very skilled at a young age at suppressing some of their feelings. Believe me when I say that children, even infants, can feel loss and can grieve. But, many children have been given the message that it is not acceptable to show sadness, cry or verbalize their feelings around loss. So, when they wonder who will put the star on the Christmas tree this year now that mommy is gone or who will carve the turkey now that grandpa is gone, they might keep those questions to themselves. Just as many adults don't want to bring up a sad topic to their friend and make them cry, so too do children want to avoid being the one that makes their parents cry. So, check in with your children if they have also lost someone and encourage them to follow these same tips.
How to help a grieving friend during the holiday season
1. Be there
There are few things in life that can make you feel as powerless as watching someone you love have their heart broken. For many of us, we can only take so much time in that uncomfortable place before we need find something to distract ourselves. Rather than running away from the pain, try to lean in to that discomfort and be there for your friend. Acknowledge to them that you understand the holidays may be difficult for them. Remind them that you care about them and will be there for them. There are no magic words you can say to make things better. Just being there with them physically is sometimes magial enough.
2. Ask questions
Ask your friend what they need. Rather than saying "let me know if you need anything" or "I'm here if you need me," be brave and ask things like "What will be the hardest part of Thanksgiving for you?" or "What do you need to help you get through the season?" Encourage your friend to be honest with you about their needs.
3. Talk about their loved one
You did a double take when you read this one, right? For many of us, we have been conditioned to avoid talking about someone who has died. We don't want to upset our friends and remind them of their loss. We don't want to make their pain worse. Guess what? They probably are always thinking about their loved one. Their heart is always hurting. One of their biggest fears, especially if they are a parent who has lost a child, is that the world (and they, themselves) will forget their loved one. Say their name. If you knew them, talk about your memories of them. Talking about them will give your friend permission to also talk about them and doing so will help immensely with their grief process.
4. Include them
Even though your friend may not feel much like socializing at times, continue to extend invitations. Don't assume that just because they have declined your last four invitiations means they will never be interested in hanging out with you again. That 5th invitiation just may be the one that finally gets them out of their house.
5. Don't take it personal
When your friend turns down your invitiation to your Christmas party or backs out of your girls' night out at the last minute or doesn't return your text message right away, don't take it personal. Remember that the holidays aren't always the joyous, wonderful time that Hallmark makes them out to be. For some people, they are a sad reminder of those who are no longer with us.
***For a listing of local seminars on Surviving the Holidays, visit http://www.griefshare.org/holidays seminar
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I have always been an animal person. If I am being honest, I am just a few pets away from being the stereotypical crazy cat lady of the neighborhood. In fact, there is a high likelihood that the 90 year old version of myself will live in a house with at least a dozen stray cats and five rescue dogs. Animals find me everywhere (ok, maybe I find them). During my high school years, I somehow adopted more than one neighborhood feral cat. I once left a beach party in the Dominican Republic to hang out with the local beach dog. A feral kitten climbed into the wheel well of my tire 8 years ago and she still lives with us. I went to the pet store for cat food one day and witnessed a pair of juvenile cats get separated as one was purchased; so, I adopted the other one. I now have three dogs - all rescues and all a bit quirky.
Why do I have so many pets? It's simple, really. They bring me and my family lots of joy. They teach us invaluable life lessons; things like love, patience, responsibility and care giving. But, they also teach us about something else - grief and loss.
When our senior dog, Sandy, made it clear to us that her time was coming to an end, we had a long conversation with our two boys, ages 5 and 8 at the time. The plan was that our veterinarian would come to our house and euthanize Sandy in front of the fireplace, her favorite spot. We asked our boys if they wanted to be there and arranged for child care in case they didn't. Surprisingly, they both wanted to stay and be a part of it; and so they were. After spending the afternoon loving Sandy, giving her all her favorite things and carrying her to her favorite places in our home, the four of us sat on the living room floor, in front of the fireplace, in a circle around Sandy while the vet and his vet tech helped us to say goodbye. She died in our arms and it was the most beautiful, amazing and heart breaking thing we have ever experienced as a family. Saying goodbye to Sandy after 12 years was nearly impossible; but watching our children say goodbye to a pet they had known their whole lives crushed us.
Death is death. Loss is loss. Grief is grief. For many people, losing a pet is exactly the same as losing a human and for children, the loss of a pet is often their first experience with death. It was for my boys. It was their first family member to die and I so badly wanted to shield them from the grief but I knew that I just couldn't. Death is as much a part of life as birth and one of my jobs as a parent is to help my children understand and process all the things that surround death. Having worked in the bereavement field for many years and having experienced pet loss twice as a parent, once as a sudden loss and once as a planned loss, I have developed some important insights into how best to handle pet loss with children.
1. Remember that every child is unique.
A family friend recently lost their dog and I asked my two children for some advice for their friends. One child said "Talk about him. A lot. It helped me to remember stories and look at pictures." The other said, "Think about happy things - vacations, movies, stuff like that. Don't think about the dog. I didn't like when I thought about her." Their approaches could not be more different and both approaches are ok. Remember that no two children are the same. Siblings will likely grieve very differently. It is normal. How one child handled one pet loss may be different than how they handle another pet loss later in life. Remember that there is no cookie-cutter approach to handling loss with children. Let their individuality guide you and resist the urge to compare.
2. Be honest
If you know a pet's health is failing, be honest with your children. Children are smarter than we often give them credit for and they probably have already noticed the same signs you are noticing as your pet's health fails. There is a tendency, especially with smaller pets like fish, birds and hamsters, to lie to children and quietly replace the dead pet with a new pet. I always advise against taking this approach. For starters, your children will, at some point, find out that you lied to them, and while we lie about things like the Tooth Fairy and Santa Clause, lying about death is a different type of lie and can cause confusion in children later in life. Death and grief are painful but your children will encounter them in their lives. Help them face death, grief and loss head on. Look at it as an opportunity for growth rather than an impossible challenge.
3. Invite them to be part of the process
If euthanasia is being considered, let children know, in developmentally appropriate terms, what is happening in the pet's body and what the plans are for saying goodbye. Let your children know they can ask you and the vet questions (check with your vet ahead of time). Invite them to be part of the process and explain what their involvement could look like. Let them know they can back out of the process at any time and have an escape plan ready for them. While having them be part of the process may be scary for us as parents, it can actually provide children with the concrete information they need to more effectively handle the loss. It also sends them a message that they are important and their input is valued.
4. Have grief books available for them.
There are countless books available for children of all developmental stages about pet loss. Purchase books, borrow some from a friend or take home a few from your local library. Leave the books in a designated spot in your home and let your children know you are always available to read the books with them or they can take one and read it on their own. This approach gives children control and power but also sends the message that you are there to support them. Take some time to read the books first to make sure they will be appropriate for your children. A list of books can be found here.
5. Don't be quick to put everything away
We had to put Sandy's dog bed away immediately. It was too painful for all of us to look at. But, we kept her collar out. In fact, it's still out. Her ashes and collar sit on our mantle, a reminder that she was real, our love for her was big and that she was an important part of our family. We found a way to keep memories of her around without breaking our heart into a million pieces. It might be helpful for your children to leave at least a few things out to remind them of your pet. Talk with your children and get their input.
6. Consider some sort of memorial service
This tip may sound a bit hokey and cheesy. This service is not for your pet, but for your children. Formal services help us to acknowledge and share our grief. Children often need this time to openly and formally express and share their own grief and also observe the grief of others. Children can draw pictures, write out cards, put together a memory board or picture book and say a few words. Invite them to participate but let them know it is not necessary. Let them sort of drive the bus. One child may want to participate while another may not want to be involved. Both approaches are acceptable.
7. Have some quiet family time
There is a tendency to distract and keep everyone busy following a pet loss. While this is a good approach to a point, it may send the message that grieving about your pet is not normal and not allowed. It might send the message that grieving is abnormal and shameful. Some quiet time as a family should be scheduled to allow for some natural grief reactions to occur - things like movies at home, board games, quiet time for reading, etc may be quite healing for everyone. Sometimes, especially when we have active children, our lives move 100 miles an hour and time for things like grieving just slips away. Create some space and time for your children to feel and express their emotions. Bedtime also seems to be a good time for families to share some quiet moments together.
8. Remember that "mad" and "sad" do not equal "bad"
Anger and sadness are two of the most common emotions felt by children following a loss. For many children, these feelings are complex, confusing and overwhelming. As children are concrete thinkers and death is such an abstract concept, expressing their feelings with words can often be a challenge. Thus, it is common for some children to express their grief through actions and sometimes these actions can be labeled as "bad" behaviors. You may see increased acting out behaviors like siblings fighting and bickering more, teasing, negative attitudes and grumpiness. You may also see regressive behaviors such as bed wetting, thumb sucking, asking for help with things like tying shoes - things they were able to do for themselves previously. These reactions are often normal and are temporary. As children have opportunities to express and process their feelings, their behaviors will often return to normal.
9. Communicate with other adults
Depending on your child's age, they may have other important adults in their lives. Send a quick email to those important people (i.e. their teachers and their coaches) to let them know that your child just experienced a pet loss - not as an excuse for behaviors but as a heads up for the child seeming off and also as an extra set of eyes. Let your children know that you are doing so. When Sandy died, my boys were in 2nd grade and preschool. Both boys' teachers were great and pulled the boys aside privately to express their condolences and gave them an opportunity to talk about it with classmates. One did. The other didn't. The younger one did draw about it later on - sometimes during school, sometimes at home. The teacher appreciated knowing about the loss as it helped guide her discussions with him about his drawings and writings.
10. Be real
The trickiest part of all of this is that you, as a parent, are also grieving. Contrary to what many people think, it's ok to let your children see you cry. You do not need to "be strong." Rather, be real and let go of some of the pressure you put on yourself. When Sandy's remains were ready to be picked up, we were not prepared for how intense our emotional reactions would be. When we got everything home and took the urn out of the bag, I broke. Sobbed. Then, we all did. You know what? We were ok. We supported each other and my children were not scarred by seeing me cry. Rather, they had the opportunity to see me safely express my raw feelings and saw me put myself back together. Give your children a good model for grief.
For most people, many of the suggestions provided feel strange and uncomfortable. I get it. It is quite likely that my suggestions are completely opposite of what your gut may be telling you to do. So many of us have been conditioned to not openly grieve, to not talk about our feelings. Think about how we, as a society, view death and grief. We avoid them, at all costs. We provide 3 days off for bereavement and then send the message to those that have lost someone that they should hurry up and move on, get over it, find closure. I firmly believe these messages are wrong.
There is no such thing as closure. We never heal after a loss. There is still a hole in our heart and sometimes something triggers us, sending us right back into the dark depths of grief. That is normal grief. As parents, we can choose to send our children a different message about grief than the message that many of us were given. We can teach them that feeling pain and grief after a loss is normal, acceptable and healthy. We can provide opportunities for our children to express their feelings and can reassure them that grief, although at times messy, uncomfortable and frightening, is normal.
The Association for Pet Loss and Bereavement
The Pet Loss Support Page
If you have ever known someone with a terminal illness, you probably are at least somewhat familiar with the "H" word. You know the word. It's the one that makes many people cringe when they hear it. It's the word that can stop a cocktail party conversation in its tracks. It's the word that most people facing an illness with a loved one hope no one ever utters around them. It's the word that for many people is synonymous with giving up, giving in and asking to die. For many, it's a word that is probably uttered less than a curse word.
Even the act of reading the word stirs up deep dark painful feelings. I can hear many of you now. "Once THEY got involved, mom died right away." "THEY only want to kill their patients." "THEY make you give up all hope." "We don't need THEM." Many of you have already gone ahead and closed down this article. Often, people want to avoid talking about the H word at all costs - even if it means losing out on an opportunity to improve someone's quality of life when quality perhaps matters the most.
But, like any good Social Worker, I'm here to gently encourage you to look at the hard stuff; explore your feelings a bit more in detail, offer some education and perhaps even aid you in adopting a new perspective. What if we could change our collective view of Hospice? What if we could truly find a way to help people at the end of their life?
Don't get me wrong. I completely understand the feelings and the sentiments about Hospice. But, the vast majority of the information I hear from the general public about Hospice is wrong. In my professional and personal opinion and experience, Hospice and Early Intervention (or Part C Services under IDEA Law) Services are two of the most misunderstood and under utilized resources available to Americans.
For many people, it seems Hospice is only considered in the last few days of life but that's a bit like only being open to enjoying summer during Labor Day weekend and forgetting about May, June, July, August and the start of September. When selected with open-mindedness and proper timing, Hospice can be a gift and an opportunity.
Hospice Improves Quality of Life and Provides Extra Support
Think about what many people facing terminal illness experience as they approach the end of their life: pain, hospitalizations, financial burdens, loss of power and independence, isolation, fear. Hospice can help with all of that! Nurses and doctors who specialize in effective pain management are available for consultation with one of their primary objectives being patient comfort. Conditions, treatments and problems that usually require hospitalization can often be successfully and comfortably managed in a patient's home. No more ambulance rides, waiting in emergency rooms or having to share hospital rooms with strangers. If the patient would like, they can have multiple hospice visits per week from people such as nurses, home health aides, homemaking professionals, social workers, chaplains, volunteers and alternative therapists specializing in treatments like music, massage and reiki. Family members can take a break and be more than caregivers. They can be family again - just there to visit. Hospice can even arrange for 5 days of complete respite care for patients and families. Patients can have someone to talk to without feeling like they are burdening their family. With Hospice, patients' experiences at the end of their life can be quite different. Imagine what it could look like: comfortable, at home, less financial stress, ability to make decisions, companionship, space to safely process feelings.
Hospice Just Might Make You Live Longer
What? You are eligible for hospice when two or more doctors believe that it is likely that with typical progression of your disease, you could die within 6 months. Yet, research has shown that sometimes signing on to hospice not only improves your quality of life but also lengthens how long you live. (Click here for additional information on this research.)
No, Hospice doesn't have a secret, magical cure. Rather, I suspect that the improvement in quality of life and the additional supports allow patients to relax and release some of their stress. This change in quality and focus then translates into more time. Not just more time though - better time!
Hospice May Allow Greater Control
Some of my most amazing professional memories have come from my work in Hospice. With Hospice, patients are given space to dream and imagine ways to take control of their final months of life and truly make some life changing decisions. I have witnessed a young father purchase beautiful earrings with the support of Hospice to be given to his teenage daughters on their future wedding days, long after he would be gone from this Earth. I have witnessed a grandfather say that his dying wish was to make it to his granddaughter's wedding. With support from his Hospice aide and generous donations secured from the community by Hospice workers, he was able to attend the entirety of his granddaughter's wedding despite being bed-bound, on a morphine pain pump and on continuous oxygen. And I have witnessed a very young mother pen a number of letters and cards for her then 5 year old daughter to have for future birthdays and special events. Hospice gave these patients the permission, encouragement and tools to leave some pretty amazing legacies. They were able to die without any unfinished business left behind.
Hospice Offers Choices
There are some pretty amazing Hospice agencies out there today. There are small boutique agencies with only very small caseloads. There are mammoth agencies that serve thousands of patients. There are agencies that only provide hospice services at home and agencies that only provide service in nursing homes. Patients have choices! Patients and families can choose the hospice agency that best meets their needs.
Hospice Does Not Require Giving Up Hope
Many people believe that you cannot sign onto Hospice until you are unable to work, unable to leave your home, unable to drive and have agreed to sign a DNR or MOLST form. Guess what, it's simply not true. Contrary to what some people believe, there is no need to sign a Do Not Resuscitate or Medical Order for Life Sustaining Treatment. Patients can change their minds and discharge themselves from hospice services. They can change their minds again the next day and reinstate Hospice. Patients can still be working full time. Patients can drive and travel long distances. I once helped a patient travel from Boston to Hawaii to see her family and arranged for Hospice care from a Hawaii-based Hospice agency while she was away! Some Hospice agencies even have open door policies that will continue to pay for treatments like chemotherapy and radiation while a patient receives Hospice services.Patients can still fully live their lives while also accessing services and supports through Hospice. Patients can still have hope!
Hospice Provides Bereavement Support for Families AFTER Loss
Perhaps one of the biggest secrets in Hospice is the existence of bereavement support. All Hospice agencies are required to provide bereavement support to the families of their patients for at least 13 months following the patient's death. Many hospices facilitate grief groups, provide individual grief therapy, host annual memorial services and provide monthly support newsletters. The bigger secret? You can access most of these bereavement supports even if your loved one did not access hospice.
I know that not every Hospice agency is perfect. I know that not every Hospice worker is in the field for the right reasons. I know that some people have had truly awful experiences with Hospice. None of those, however, are the norm. Hospice does not have to be the "H" word. Doctors and well -meaning friends don't have to tiptoe around Hospice discussions with patients. Hospice can be a light in the storm, a ray of hope, a lifeline. It can be good.
If you are interested in learning more about Hospice agencies in your area, either for a patient or as a potential volunteer, please visit the National Hospice and Palliative Care Organization website at http://www.nhpco.org/find-hospice
"You matter because you are you, and you matter to the end of your life. We will do all we can not only to help you die peacefully, but also to live until you die."
- Dame Cicely Saunders, nurse, physician and writer, and founder of the hospice movement
About Changing perspectives...
I often find myself encouraging people to consider changing their perspective or reframe the way in which they view things. This blog is an extension of that practice and is also an opportunity for me to write from a number of different perspectives including clinician, educator, mother, friend and supervisor. Blog topics are also quite varied and changeable. Topics explored include, but are certainly not limited to, grief, parenting, health and wellness and relationships. Join me and explore a number of changing perspectives!