Tweet

by Lizzy Miles (@LizzyMiles_MSW)

No one should ever be “put” in a nursing home. You might agree with this statement because you don’t like nursing homes, but that is not what I’m saying. The word “put” is offensive when you are describing a person, unless you are talking about putting a 3 year old in the time out corner because he colored on the walls.

I would like to make the argument that no adult wants to be ‘put’ anywhere. You put dishes away, you do not put people away. When we are facing a situation in which the care needs exceed the family member’s ability, there are times where the best option is for the elder to move to a safer environment.

Let’s look at these two scenarios:

Daughter puts mom in a facility because mom is too much of a burden for daughter to take care of at home.

Or

Mom moved to a new community in which there were nurses who could take care of her health care needs. There are chefs who make her meals and caretakers who help her with her activities of daily living. She has opportunities to make new friends, play bingo, listen to music, and arrange flowers. Daughter’s time with mom can be spent sharing memories, watching movies and working on jigsaw puzzles together.

Same scenario. Which one feels better to you?

We do not want to say to our loved one, “You are too much for me.”

What we want to say is, “I want you to have the best care possible and I believe this choice will be better for both of us. I love you and I will continue to spend time with you.”

I should know. I was the daughter. I was an only child in my late twenties when my mom’s sister died. My aunt had lived near my mom and checked in on her daily. My mom was in declining in health and not really doing the best job caring for herself. She wrecked her car and wasn’t eating well. And suddenly I was the one responsible for her and I lived 90 minutes away. I was still working full time and tried to take care of things long distance, but I didn’t feel it was working. There was no end in sight either - though she was declining, she wasn’t terminally ill.  After touring seven facilities, I found one that I liked and brought her to see it. She liked it and moved to an assisted living facility in my city that would be able to care for her until the end of her life.

As it turned out, it was the best decision I could have made. The facility staff welcomed her with open arms and she thrived. She lived there six years and was the happiest I had known her my whole life. During this time my mom and I even became closer than we ever had before.

There is no happy place. Happiness is an attitude.

We’re not supposed to have favorites in hospice care, but a hospice patient who was on service for a couple of years just recently died. I’m really going to miss her. Every time I saw her she was always smiling and expressing gratitude. She was the happiest person I had ever seen in a facility, including my mom. She dressed to the nines with all of her bracelets and necklaces and gushed about the staff, the activities and even the food. As you can imagine, when facility staff were giving tours, they always introduced her to the visitors. This resident also had very attentive staff because she was such a pleasure to be around. Her joy for life was contagious.

Yes, a move to a nursing home is hard, but most patients adjust. In my experience, those who don’t adjust are likely to be unhappy in any setting.  There are residents who don’t leave their room at the facility – but I bet you they never left their house either.

One final story. A patient who had lived at home ended up moving to a facility due to increased care needs. I visited her a week after she had moved and I personally felt sad that she didn’t have pictures or personal items. She, however, looked around the room devoid of belongings and said, “maybe this is how things are supposed to be. Maybe we don’t need a lot of stuff.”  I had no idea she used to be a hoarder. She didn’t know it, but she was embracing the new minimalist trend.

We decorate rooms and put pictures on walls at the nursing home because we are the ones who are still attached to belongings and things. Part of growing older is shedding the past and the stuff. If you ask any resident in a nursing home of what they want most, it is not their china or their figurines and sometimes not even their pictures, but rather to be with those they love. Yes, there are those elders who built their home with their bare hands and they are attached to “place” but most of the time, it ends up not being about the place but the fear of being forgotten. Consider this though: in a facility, elders have much more human interaction and attention to emotional needs than they do at home with a single exhausted caregiver who is at their wits end.


Love and companionship can take place anywhere. 

Hospice personnel can help family members have these conversations. We lead the way by how we frame it. We can talk about anticipated care needs and why moving may be the best option for care. We can share stories about attentive, compassionate care and the activities that the facility has.  We can remind the patients and families that we’ll be there with them too.

Language matters. Words matter.

Let's talk about RESPITE

If you’re talking about a temporary respite with a patient, how do you bring it up?  Is it because the caregiver is exhausted? How would you feel if you were the patient and someone told you that you were “exhausting?”  Imagine hearing, “I need a break from you.” The caregiver needs to be firm with the patient about their needs but they can do it in a way that doesn’t come across in a way that makes someone feel like a burden.

Consider saying something along the lines of “I want you to have the best care possible and right now I don’t feel I am able to do that for you. Please - I would like to take a few days to rest and recharge my batteries. It will only be until x day and then you will be back home again.”

If the respite is for night time relief and the caregiver is planning on visiting during the daytime, say so. “I’ll come visit you so we can catch up on the news/family/whatever.”
When families are in the midst of caregiving, we can sometimes forget about the relationship we used to have with the patient. If we take time to consider the way in which we talk about caregiving needs with the patient in a way that demonstrates the love that we have, we may be able to alleviate some of the sadness or feelings of abandonment.


Lizzy Miles, MA, MSW, LSW is a hospice social worker in Columbus, Ohio and regular contributor to Pallimed.org. Lizzy authored a book of happy hospice stories: Somewhere In Between: The Hokey Pokey, Chocolate Cake and the Shared Death Experience. Lizzy is best known for bringing the Death Cafe concept to the United States.
photocredit:
hands Photo by Rod Long on Unsplash
plant photo by Sarah dorweiler on Unsplash
all other photos via author

Tweet

by Sujin Ann-Yi

According to the Caregiving in the US 2015 research report (PDF) conducted by the National Alliance for Caregiving (NAC) and American Association of Retired Persons (AARP), 43.5 million adults in the US have provided uncompensated care to an adult or a child in the past year. The same report found caregivers provide on average 24.4 hours per week of support to their family member. Spouses were found to provide on average 44.6 hours per week and almost 25% of caregivers provide 41 hours per week.

Caregivers refers to family members who provide ongoing continuous care, typically without any compensation, for those with serious health issues such as cancer. Family caregivers provide significant support to patients which includes but is not limited to physical, psychological, spiritual, and emotional support as well as communicating with health providers, treatment monitoring, administering drugs and medical treatments, and advocating for their loved ones (Caregiving in the U.S., 2015).

Caregiver distress results when caregivers have overwhelming demands and unmet needs, coupled with other stressors such as feeling isolated, feeling burdened, financial strains, negative emotions, and work loss. A positive correlation has been reported between cancer patients’ and their respective caregivers’ distress (Hodges, Humphries, Macfarlane, 2005). Caregivers are at risk in developing both depression and anxiety as well as consequences to their own health (Nipp, El-Jawahri, Fishbein, et al., 2016; Palos, Mendoza, Liao, et al., 2011). Caregiver distress is associated with: being female, younger age, being the spouse of patients, lower social economic status, employed, and lacking personal and social support (Kim, Given, 2008).

In the spirit of family centered care, recent attention has focused on directly identifying and providing support for caregivers in addition to patients as part of standard care. Palliative care professionals have improved symptom management and quality of life for patients and have intuitively included patient’s families and caregivers. Palliative care has been associated with improved caregiver well-being, family satisfaction, and physical and psychological symptom management for patients and caregivers. Early palliative care with newly diagnosed lung and GI cancers showed improved depression and quality of life in caregivers (El-Jawahri, Jackson, Greer, et. al., 2016).

Please join me @sujinannyi for our #hpm tweetchat to further discuss how palliative care professionals can play an instrumental role in identifying and addressing caregiver distress.

T1: Do your respective organizations currently either formally or informally assess for caregiver distress? If so, what is the process and what tools do you use if any?
T2: What services or resources are offered for caregivers at your respective organizations?
T3: What are some barriers for providing intervention and support for caregivers in your respective organizations?

What: #hpm (hospice and palliative med/care) chat on Twitter
When: Wed 10/26/2016 - 9p ET/ 6p PT
Host: Sujin Ann-Yi, PhD @sujinannyi

Follow @hpmchat and go to www.hpmchat.org for up to date info.

If you are new to Tweetchats, you do not need a Twitter account to follow along. Try using the search function on Twitter. If you do have a Twitter account, we recommend using tchat.io for ease of following. You can also check out the new site dedicated to #hpm chat - www.hpmchat.org

For more on past tweetchats, see our archive here.

Sujin Ann-Yi, LMFT, PhD is a palliative clinical psychologist from MD Anderson Cancer Center and is hosting her first #hpm chat.

References

Caregiving in the U.S. 2015 (2015). Retrieved from The National Alliance for Caregiving and the AARP Public Policy Institute websites
http://www.caregiving.org/caregiving2015/
http://www.aarp.org/content/dam/aarp/ppi/2015/caregiving-in-the-united-states-2015-report-revised.pdf

El-Jawahri, A., Jackson, V.A., Greer, J.A., Pirl, W.F., Park, E.R., Back, A., Muzikansky,A., Kamdar, M., Rinadldi, S., Jacobson, J., Fishbein, J., Eusebio, J., VanDusen, H., Nipp, R.D., Ryan, D.P., Temel, J.S. (2016). Effect of early integrated palliative care on family caregivers outcomes for patients with gastrointestinal and lung cancer. Journal of Clinical Oncology, 2016 Palliative Care in Oncology Symposium, 34, 234.

Hodges, L. J., Humphris, G.M., Macfarlane, G. (2005). A meta-analytic investigation of the relationship between the psychological distress of cancer patients and their carers. Social Science & Medicine, 60, 1-12.

Kim, Y. and Given, B.A. (2008). Quality of life of family caregivers of cancer survivors. Cancer, 112, 2556-2568.

Nipp, R.D., El-Jawahri, A., Fishbein, J.N., Gallagher, E.R., Stagl, J.M., Park, E.R., Jackson, V.A., Pirl, W.F., Greer, J.A.,Temel, J.S. (2016). Factors associated with depression and anxiety symptoms in family caregivers of patients with incurable cancer. Annals of Oncology, 27, 1607-1612.

Palos, G.R., Mendoza, T.R., Liao, K.P., Anderson, K.O., Garcia-Gonzalez, A., Hahn, K., Nazario, A., Ramondetta, L.M., Valero, V., Lynch, G.R., Jibaja-Weiss, M.L., Cleeland, C.S. (2011).Caregiver symptom burden: the risk of caring for an underserviced patient with advanced cancer. Cancer, 117, 1070-1079.

Tweet

A conversation between two specialists
by Allie Shukraft and Lizzy Miles

At both ends of the generational pendulum lie two groups that may seem to be daunting to some: children and the senior population.  These are specialty populations because there are unique considerations with aspects of their medical care, especially within the framework of palliative and hospice care.

Here Allie Shukraft, pediatric palliative care social worker, and Lizzy Miles, geriatrics hospice social worker, discuss some of the differences and similarities between these two seemingly divergent specialty populations. Allie and Lizzy also describe their social worker roles as they relate to their patient groups.

This article addresses systems theory and how we can provide support for additional people in the palliative patient’s life, beyond the primary caregiver. This is the fifth article in a series of joint conversations about the similarities and differences with pediatric and geriatric specialty populations. (Read the other posts: Developmental Life Cycles, Social Work Research, End-of-Life Decisions, Getting Started).

In many articles about hospice and palliative care, there is an additional emphasis placed on supporting the caregiver in addition to the patient.  In our work with patients, we are often asked to identify the “primary” caregiver so as to have a point person for our communication. We know, though, that there are often many more people in a patient’s life that are affected by their terminal disease. Often we have face to face encounters with these additional loved ones. This article intends to identify the types of additional people we often see in pediatric and geriatric settings, and provide suggested interventions on how we might be able to practically provide support.

First and foremost though, let’s talk about the primary care provider in each respective specialty.

Allie: In the pediatric world, many of the conversations and even interventions are aimed at the parents who tend to be the primary caregivers for palliative care patients. Whether this is one person or more depends on many factors: are the biological parents married or even together in a romantic relationship? If they are not together, are they amicable and choosing to co-parent? Are both birth parents alive and are they both of age to consent (this varies by state)? Are there additional significant others in their lives, such as other spouses who are now step-parents? Is the patient adopted or in DSS custody? Are the primary caregivers foster parents, extended family members providing care for one of a number of reasons, or is the primary caregiver some other person who has informally assumed a role in this child’s life? Although it can be uncomfortable to ask these kinds of questions (for example, I have learned by trial and error to ask vague questions such as “how are you connected to this child?” rather than assuming questions such as “are you Grandma?”).

It is important for several reasons to assess these relationships. The medical team needs to know who is caring for the child, that the adults in the room are capable of and legally entitled to make decisions for the child (and receive medical information from the team), and that the child will be safe and well cared for upon discharge. We now live in a world where, increasingly, family is defined by the systems in which the children operate, rather than by biology.

Another thing to consider in the pediatric world is the patient’s age. Although our typical patient is 18 years of age or younger, we sometimes are able to extend our services to older patients because of their diagnoses or the duration of their treatments. For example, many pediatric oncology or cardiology programs will follow patients with pediatric diagnoses well into their twenties. For these patients, their own significant others often take over as primary caregivers, sometimes in conjunction with the patient’s parents, sometimes on their own. This can put a huge strain on a young relationship which, as many of us may remember from our early twenties, likely faces many challenges already.

Lizzy: To begin with, the age range for someone who is considered a geriatric patient is expansive – covering more than forty years, if you define geriatric as over the age of 65.

The nature of the relationship of primary caregivers we see with the geriatric population are widely varied. The primary caregivers who are family members might include: spouse, sibling, sibling-in-law, child, child in-law, niece, grandchild, great niece, great grandchild, ex-spouse, ex daughter-in-law.

Other than family members, primary caregivers can include: friends, lawyers, professional care managers, and guardians.

One might assume that younger patients are more likely to have a caregiver that is a spouse, but I have had many patients in their nineties whose primary caregiver was a spouse who was also in their nineties. You can also have a geriatric patient whose caregiver is their parent. It is less common.

Let’s now identify the peripheral people that we come into contact with in our day to day care of the patient.  

Allie: In the pediatric world, this typically encompasses grandparents and siblings, with extended family, church community members, and members of other systems in which the patient participates (which may include school staff and classmates, teammates, scout troop members, and various other communities). Although these people likely care about the patient a great deal, many of them have never gone through a child’s serious illness before so they often benefit from guidance of some kind. The type of guidance varies, but often having a specialist such as a Child Life Specialist or a Chaplain or Social Worker speak to these people about what is helpful and what feelings are normal can be beneficial.

Although the patient and the identified immediate family are likely the ones hit hardest by the illness, others will feel it too, and they may be unaware of how their experience differs from that of the immediate family or what they can do or say to be helpful. To be fair, when faced with someone else’s pain, it can be difficult for anyone to “just be there” as we often want to provide comfort or “fix things” in some way. Phrases that are intended to be helpful in this way (such as “well at least . . .”, “stay positive”, or “everything’s going to be fine”) can actually serve to minimize the patient’s experiences and can damage trust and even end relationships.

Lizzy: For elders, it may depend on how social the elder was and how many organizations or communities the elder knew. Obviously, there can be other family members besides your main contact. These other family members may be all the ones that are listed in the primary caregiver section above. In addition to family it’s powerful to see how many other people can show up to visit the patient. When there is a revolving door of visitors, you know this patient is going to be highly missed.

If a patient lives in a long term care community, there are two main groups of visitors beyond family and friends: other residents and facility staff members.

If a patient lives at home, the additional people you might come into contact with are: fellow congregates from their church, former co-workers, friends and neighbors.

Supporting the network: Start with gathering information

Lizzy: The first thing to do is to have a conversation with the patient and with the primary caregiver about who is the most important of their family and friends.  Sometimes you learn that simply by who is present during the admission.  I have admitted patients to hospice with an audience of 10 people in the house. Everyone wanted to hear the information that was being provided.

Many hospice admission packets ask about information disclosure. When you are covering this information and they get fatigued by trying to list everyone they can think of, including in-laws, you will get an idea that they have a large, open system.

Suggested Intervention: Ask the patient, “Who is most important to you?”

Supporting the network: Traffic control

Allie: One of the things that any pediatric nurse worth his or her salt will do is take on the role of the “bad guy” and limit visitors, whether this is because of hospital policy or patient or parent wishes. One thing that many people don’t realize is how much energy being sick or taking care of a sick person can use up. Whether you are active all day or just spent most of the day sitting there, watching your baby who is too sick to hold, all of the conversations you have had with staff and family, as well as all of the worrying and the stress of life with illness can take a toll. As professional caregivers, it can be helpful for us to suggest limiting the number of people in the room with the patient, keeping visits short, or even turning people away who are not needed or when someone in the room is sleeping. Depending on the circumstances, this can mean staff as well as visitors and even close family and friends. Sometimes a patient or parent need our permission to do this; at other times, they need us to step in and limit visitors or turn people away. I have had parents tell me that they would not turn people away because it would feel rude but then beg us to keep everyone out. It is also important that we do not ask the caregiver or patient in front of the visitor if they are allowed in. This places the power back on the patient or family, rather than the staff member.

Lizzy: It is not our responsibility to decide who should visit and when. Our role is to support the patient and family to ensure the visits are helpful and wanted. We need to encourage the patient and caregiver to set boundaries if they are tired or do not feel up for visits. They might be exhausted and not know how to defer visits to another time. We can offer suggestions for how the caregiver might manage the visitor schedule. Understand that it is not uncommon for caregivers to choose not to send people away even though they are tired…and that is okay as well.

Suggested intervention: Provide suggestions to caregivers for what to say to defer visitors (if desired) and/or how to set up a visit schedule.

Supporting the network: Emotional support

Allie: At times in the pediatric world, visitors can feel like they don’t know what to do or say, and they may struggle with feelings of inadequacy as a support or like their role in the child’s life is unimportant, possibly because they are given that message by the patient who might ignore them or have low energy, or perhaps the parent did not acknowledge them as they expected. It is important to thank anyone who visits while you are there and acknowledge that it can be difficult to know what to do or say and that their time shows they care. It can also be helpful to offer them the same presence that you would offer a patient or family. Offering a silent, safe space for these visitors can allow for them to share about whatever they are feeling or thinking about. Possibly they are burdened by a “normal” life problem that they feel they cannot share with the parent. Perhaps they are feeling that their own relationship with the patient has been devalued because s/he is not their child, but perhaps still holds a significant role in their lives that you can acknowledge and validate without criticizing the parent for how s/he is handling it.

Lizzy: If we are present when the patient has visitors, one of the best things we can do for the visitor is to acknowledge their relationship to the patient. If the patient is non-responsive, our role may be one of education. We can inform the visitor of the patient’s ability to hear. We can give them suggestions for what they can do for the patient, such as apply washcloths to forehead, sing, tell stories or pray. We can facilitate storytelling and life review by asking questions. We do have to be careful about the information we provide if the visitor is asking questions and they are not on the approved HIPPA list. Even if we do not talk about patient condition, we can give general information about symptoms that the visitor observes.  If the visitor brings food for the patient, we might provide general educational information about how the patient may not have an appetite.  Finally, we can inform the visitor how to access bereavement services if they are desired.

Suggested interventions: Acknowledge the visitor’s feelings and allow space for them to explore what they need from you and how you might meet these needs without taking away from the family.

More social work posts on Pallimed

Allie Shukraft, LCSWA, MSW, MAT, is a pediatric palliative care social worker for Carolinas Healthcare System in Charlotte, NC where she loves reading and walking with her dogs. You can find her on Twitter @alifrumcally.

Lizzy Miles, MA, MSW, LSW is a hospice social worker in Columbus, Ohio. Lizzy is best known for bringing the Death Cafe concept to the United States. You can find her on Twitter @LizzyMiles_MSW

Tweet

by Lizzy Miles

A reluctant caregiver is a person who is unwillingly in the caregiving role for a hospice patient. There are shades of reluctance that a caregiver might have, and several ways in which caregivers’ feelings may be revealed in the course of hospice staff interaction.  It is not uncommon for many caregivers to have periods of reluctant moments. This article is about the caregivers whose feelings of reluctance are their primary emotions. We do not condemn any caregivers for their feelings, but rather identify that reluctant caregivers exist, and suggest ways in which we can navigate care along with these caregivers to provide the best care possible for the patient.

Reluctant Caregiver Themes

There are variations of the reluctant caregiver and these are not mutually exclusive categories. A reluctant caregiver can have multiple reasons why they resent their role. It is important to note that the categories themselves do not make a caregiver reluctant.

The Ex: The Ex can be an ex-spouse or even an ex-daughter in law. The Ex could still end up as the primary contact caregiver because Power of Attorney (POA) paperwork was never updated or because the patient never remarried.  Patients with this type of reluctant caregiver live in long term care facilities. The "ex" may still maintain financial responsibility for the patient, but might tell hospice team they are not emotionally connected and are only serving in the caregiving role out of a sense of responsibility.

The Out of Towner: Typically a child or a sibling, the Out of Towner finds it to be an inconvenience to be pulled in to hospice decision-making.  It is important to note there are family members who happen to live out of town who are highly engaged. The Out of Town reluctant caregiver would be the one who repeatedly expresses irritation or inconvenience related to being in a different city. If they do come into town to visit, they will convey that they come out of a sense of responsibility, rather than a desire to be with the patient.

Semi-Estranged: The Semi-Estranged caregiver is one who had not had close contact with the patient prior to the hospice admission, but is now compelled to be more involved due to patient’s declining condition. The semi-estranged may reveal past hurts with patient and often openly expresses resentment.

Obligated: The Obligated reluctant caregiver is a caregiver who is the obvious choice, but not necessarily the most willing. It is the spouse who is still married to the patient despite a history of abuse. The Obligated reluctant caregiver might be the one child of many that was designated POA, perhaps a last living relative, or an only child.

Overworked: The Overworked caregiver is one who expresses frustration with multiple situations pulling their attention. It could be a caregiver who has a busy job or the adult child of a patient with multiple responsibilities of family or other people who need care.

Lamenting: The Lamenting reluctant caregiver is one who is so distraught about the course of events with the decline of the patient that they withdraw from wanting to be involved in caregiving.  This could be the child of a patient with Alzheimer’s Disease who says the patient is not the person I used to know. The Lamenting reluctant caregiver might say something like, “I can’t bear to see him like this.”

Identifying the Reluctant Caregiver

At hospice admission, it may not be clear to the hospice team that they have a reluctant caregiver. Prior to admission, families often overestimate the amount of personal care support that will be provided by the hospice team. This can be compounded if there is misinformation given by friends or non-hospice health care providers. Reluctant caregivers are initially enthusiastic for hospice because they believe hospice will come in and take over so they do not have to do personal care.  The reluctant caregiver will be the first one to express dismay that hospice aides are not there “more.”  Often, because reluctant caregivers can be very vocal with their distress, they can be persuasive with hospice teams that aim to please.

Caregivers’ feelings of reluctance are soon revealed either directly or indirectly.  Directly, a caregiver may express discontent and frustration with outside caregiving support. They may complain about putting their own life on hold. The hospice social worker may hear about relationship issues the caregiver has had with the patient in the past.

Have you been waiting a while for the return phone call?

The passive, indirect expression of reluctance is potentially the biggest challenge to the hospice team.  It may be as simple as the caregiver not returning phone calls from hospice staff. On a more serious note, hospice staff may find the personal care provided to the patient at home is less than ideal. The caregiver may leave a bedbound patient alone for extended periods of time. The hospice team may find the patient’s Depends have not been changed for twelve hours. The caregiver may be verbally abusive towards patient. Often these situations turn into discussion in IDT meetings regarding the quality of care. We might discuss, "How bad does it need to be before hospice needs to report the family to Adult Protective Services (APS)?"

What Can We Do?

When “reluctance” presents itself as neglect

it is important for the hospice team to collaborate on ways to alleviate the situation. There are a lot of things to try before calling APS.  Question to ask:

•  Is the "neglect" due to lack of ability or lack of desire?
•  Is this a short-term situation that a caregiver respite would alleviate?
•  Has the social worker spoke with the caregiver about community resources?
•  Has the hospice nurse set expectations and/or provided education regarding patient personal care needs?
•  Does patient/caregiver have financial means to supplement care?*

*A side-note on the last question. The biggest challenge for me on this topic is the patient with a neglectful reluctant caregiver who doesn't qualify for aid, and yet doesn't want to spend money for private pay care. More often than not, these are adult children with a semi-estranged relationship with the parent.

If a reluctant caregiver is disengaged or overworked

These are the caregivers who do not answer the phone or do not return telephone calls.
•  Try to accommodate caregiver’s schedule restrictions
•  Prioritize information to convey
•  Coordinate with team to reduce number of contact messages
•  Do not ask for call back unless you need it

If caregiver feels disconnected from patient (Lamenting, Estranged)

The Lamenting or Estranged caregiver is usually the most vocal about their reluctance. These caregivers who seem to be the most receptive to psychosocial support when they are open about their emotional anguish.
•  Increase social worker telephone support to caregiver
•  Alleviate guilty feelings of lamenting caregiving by offering hospice volunteer visits to patient
•  Staff should listen and offer support but do not get caught up trying to fix or resolve situation.

The Future of Reluctant Caregivers

The number of reluctant caregivers is likely to increase as the Baby Boomer population ages.
•  More and more families are geographically separated.
•  Modern American life is composed of blended families.
•  The multi-generational family focus is rare.
•  Caregivers are often aging themselves and have their own health issues.

To provide the best care possible to the patient and family, we will need to continue to explore ways in which we can support our patients with these reluctant caregivers.


Lizzy Miles, MA, MSW, LSW is a hospice social worker in Columbus, Ohio and author of a book of happy hospice stories: Somewhere In Between: The Hokey Pokey, Chocolate Cake and the Shared Death Experience. Lizzy is best known for bringing the Death Cafe concept to the United States. You can find her on Twitter @LizzyMiles_MSW 

Tweet

by Toni L. Glover

July 9 was a good day. You know that feeling you have when you attend conference and you come back to work charged up and ready to change the world? That’s the feeling I had after listening to a live webcast of the Institute of Medicine’s Health Literacy and Palliative Care Workshop. The sessions and discussions were inspiring and conveyed the pressing need to revolutionize patient care.

I tuned in during Diane Meier’s Overview talk. Dr. Meier is one of the rock stars of palliative care and, full disclosure, I am a groupie. She asked the audience to consider where the health literacy problem lies. Is it with patients and caregivers forced to navigate an increasingly complex healthcare system or is it with healthcare professionals that offer treatments that do not add quality or longevity? More medical care is not always better care. Fee-for-service reimbursement models drive the chaos, resulting in less time spent with patients and no time for them to assimilate the information and ask questions that would allow them to make decisions consistent with their values and wishes. Too often, we offer treatments but neglect discussing the impact on quality of life.

Next I listened to Beverly Alves heartbreaking story of the difficulties of finding compassionate and coordinated care when her husband was diagnosed with cancer. It’s a strange paradox that we have made such scientific and technological advances but seem to have regressed in actually caring for patients and families. Beverly’s remarkably moving story provides a directive for what needs to be fixed in healthcare; now, not in our lifetime, but now.

Later Bob Arnold spoke about communication training for physicians. He suggested that physician-patient communication is a procedure, just like starting an intravenous catheter or putting in a chest tube. These procedures require training and practice. After all, new physicians don’t perform complicated medical procedures alone, but they are sent to talk to patients and families about prognosis, treatment options, and end-of-life care without sufficient training. Is it any wonder that physicians vastly overestimate prognosis and patients and families overwhelmingly believe that surgery (or chemotherapy) will cure stage IV cancer?

The next speaker, Elaine Wittenberg talked about communication training for nurses. The core of nursing principles aligns with palliative care. Nurses tend to assume that good nursing care is synonymous with palliative care. But it’s not. Dr. Wittenberg pointed out that nursing programs need to include more instruction in palliative care principles. In the discussion, one participant noted there was a lot of content about palliative care training for those already in the workforce but we need to more thoughtfully include palliative care content in nursing education. This struck home for me as I endeavor to infuse more palliative care content across all levels of nursing education.

We were taken to church by Reverend Richard Freeman who reminded us of the value of humanistic care. He emphasized what really matters to patients at end of life is being surrounded by loved ones. Carol Levine, and several other speakers, spoke about the forgotten caregivers. The population is aging and older caregivers are overwhelmed by navigating the healthcare maze, providing care, working, and running the household. Dr. Meier pointed out the United States spends less on social support compared to other countries. In other words, it’s easier to get chemotherapy or surgery than it is to get Meals on Wheels. An audience member shared an innovative idea: we need to train caregivers how to communicate about palliative care with the rest of the family. This ensures that everyone is on board with the patient’s wishes.

Palliative care proponents believe we need to draw a clear line between palliative care and hospice care. Palliative care is different from hospice care in that it can be offered in tandem with curative treatment while hospice care is for patients foregoing additional treatments with a prognosis of 6 months or less. Yet, I noted that the personal and patient stories shared were about patients facing end-of-life decisions. Moreover, the majority of palliative care consults at our academic health center relate to end-of-life care. I suspect this is true for most palliative care programs. I’m reminded of Dr. Meier’s saying that all hospice care is palliative care but not all palliative care is hospice care. Perhaps the differentiation between palliative and hospice care is more important to healthcare professionals than it is to the general public. What we need to convey to patients and families is that palliative care is simply patient-centered care.

I could go on about all the wonderful speakers and content, but instead encourage everyone to view thewebcast (embedded below). The webcast and the presenters’ slides will be available to replay and download. Every speaker had an important message to share. Ginger Marshall spoke about the personal notes and cards she has received from patients and families. When she has a bad day, reading these treasured notes remind her of the value and importance of the work. This webcast is a virtual card that you can open anytime you need some inspiration.


When I think about the big picture, I believe we are within the wave of a culture shift regarding healthcare. The opposing forces of old ways and new ways tend to create a tumultuous environment in our daily work lives. Heralding this shift, last week the Centers for Medicare and Medicaid Services proposed payment codes for the 2016 Medicare Physician Fee Schedule for advance care planning. If approved, these codes will allow providers to engage in meaningful and patient-centered advance care planning conversations upstream in clinics, avoiding the more difficult discussion at the bedside in the Intensive Care Unit. A recent ad drives home the point: it’s much easier to talk about your wishes when the decisions seem far away and are much harder to have while intubated with a breathing tube.

Thirty to forty years ago, the baby boomers brought about a return to natural childbirth and breastfeeding. With 10,000 baby boomers turning 65 every day, it’s time to bring about a revolution in patient-centered care and compassionate, humanistic end-of-life care. This webcast simultaneously gives hope for the progress made and provides a roadmap for the important work that remains.

Dr. Toni L. Glover PhD, GNP-BC, ACHPN is an Assistant Professor at the University of Florida, College of Nursing. The views expressed are her own and do not represent the views of College of Nursing or the University of Florida. Her research focuses on pain in older adults, pain, palliative care, and health disparities. As a Gerontological Nurse Practitioner and Advanced Certified Hospice and Palliative Care Nurse (ACHPN) she is committed to improving the care of older adults at end of life. You can find her on Twitter - @tgloverGNP

Illustration credit: Christian Sinclair for @Pallimed, available via Creative Commons

Tweet

by Jeannette Ross, MD

2014 a very special thanksgiving Chica and the whole family

This blog post is part of the world series of blogs and was posted first in Geripal. 

On a regular basis I am meeting with patients and families at crucial times of their lives and helping them make decisions. So far I had been very fortunate that nothing really serious had happened to anyone in my family. In August of 2014 my mother in-law “Chica” was diagnosed with laryngeal cancer, she subsequently had a total laryngectomy and reconstruction of the larynx in September which included a 4 week long hospital stay (due to some complications and wound healing issues) and another 11 days in rehabilitation.

The following are the lessons learned from my experience as one of several caregivers helping with my mother in law’s care while continuing my typical duties as a mother, wife, and physician. In the spirit of the baseball World Series here are nine innings worth of lessons:

1. Meet with your loved ones and know their wishes, and health information

Even though I have been part of the family for 15 years I really did not know enough details of Chicas health until she asked me to be her alternate medical power of attorney last summer. We had “the talk” in which I was able to get a good feeling for what made life worthwhile living and what was important to Chica. I started a list of all her medical problems, surgeries, allergies, medications, names and contact information of physicians and pharmacies.

We always carried copies of the list and brought it to appointments and when checking in the hospital for surgery. It was all different medical records at the ENT-oncologist, Plastic surgeon, cardiologist, primary care and endocrinologists and the list always proved very helpful. It makes a lot easier to write see the attached list on the forms, or pass it on to the person inputting the information in the computer.

If you are thinking of changing your documents don’t put it off, before it becomes an emergency. Chica had considered changing her will for several months and in addition of the shock of learning she had cancer it became a relative emergency to contact her lawyer and change her will and other pertinent documents.

2. You are only ready to hear so much

Chica usually went by herself to appointments, however coincidentally she was accompanied by one of her sons and family the day the ENT delivered the news she had cancer. Her doctor was very kind to in addition give my husband and me a call to explain to us the physician family members what the diagnosis and plans were. Having been so many times in the bearing side of the news I was a little stunned to be on the receiving side of the bad news. Subsequently several of us accompanied Chica to these initial appointments with the specialists performing her surgery.

Having several people made it easier for all of us to understand the proposed procedure and ask questions about what to expect about recovery and what life would be like. It seemed that even though the physicians were doing a great job explaining the planned procedures, It was a good thing to have several people there because we all remembered different aspects of the conversation and asked different questions.

3. Social Media can be a good source of support and to get information.

Facebook 
One of the first things I did was to join a couple of the available support groups for Laryngectomees (Lary’s) in Facebook. Some groups were closed and I requested membership. Once I joined I described that I was there as a family member of a laryngectomee. The Strictly Speaking administrator and other members warmly welcomed me and encouraged to ask questions to the group. They suggested I look at the website WebWhispers.org which turned up being very useful because there was a great wealth of resources including instructions for care after laryngectomy, suppliers, tips for humidifying air, getting a bracelet, getting a TTY telephone etc.

I like being in the group because people will pose questions and the others in the group will make helpful suggestions to the questions. I feel comforted that I could ask questions to the group if I need to.

From the  Laryngectomy Care Club group I found posts from a doctor who wrote a guide to living after a laryngectomy. He is a pediatrician and he had a laryngectomy

• The Laryngectomee Guide [Kindle Edition] By: Itzhak Brook M.D (to download a free PDF of the Laryngectomee guide click this link)

I also read his other book in the kindle app that talks about his experience with laryngeal cancer (My Voice: A Physician's Personal Experience With Throat Cancer). I was reading this one while I was accompanying Chica a few days after her laryngectomee. He highlighted some of the challenges he had while in the hospital and medical errors. We followed some of his strategies like writing down the questions for the doctors ahead of time.

Youtube 

• Communication after laryngectomy.mov: it is brief and a bit humorous at times, these laryngectomee persons highlight the challenges of having had a laryngectomy. Chica and I had a good laugh watching this while learning useful information.
• Total Laryngectomy education:  Patients and physicians at The University of Kansas Department of Otolaryngology discuss expectations and experiences for patients and families planning for a total laryngectomy. Very detailed and it was perfect when I was trying to absorb as much information as I could in a short time. 
• How to provide emergency care to Neck Breathers: I can’t believe that in as many times that I have taken the basic life support and the advanced cardiac life support course (at least 10 times) I have never once been instructed on the basics to assist a laryngectomee or other neck breather experiencing breathing difficulties. Dr Itzhak Brook has a detailed video on how to do it. 
• How to use a PEG tube: There were many videos out there of people showing how to do this. I made playlist of the ones I found useful. As a physician I have many time written orders to administer medications and feeds via PEG. Getting to administer them was a little intimidating and stressful at first. We had complications with the feeding tube getting clogged up and were very glad to have the home health nurse come and troubleshoot it for us. Just reinforces to me how amazing nurses are! 

4. Advocacy

As a family member you are the biggest advocate for your loved one. One day as I was leaving to the hospital my husband said “don’t be too tough of the doctors and nurses” I told him that if Chica was in pain I was going to be tough. As family member we were on top of calling the nurses for suctioning, assistance with pain, anxiety, etc. With some complications during the hospitalizations we sometimes ended up changing floors and rooms, and while the major issues were addressed like breathing and heart rhythm problems, sometimes other details got missed on like when the last bowel movement was. Honestly if I was in charge of the hospital I would make sure everyone got asked about their bowels daily. I would also give patients the option of waving a flag like this one:


Ok I admit that I saw this flag at the Austin City Limits festival and have been waiting months for the opportunity to use it.

5. Use of Technology to communicate

It was very challenging for Chica to communicate at first. She had her larynx removed so she couldn’t talk and she had her right arm in a cast and immobilized because that had been the site from where muscle had been removed, she also couldn’t start using an electrolarynx right away while her tissues healed. So essentially she was left with the non-verbal language and using her non-dominant left hand to communicate.

• Ipad apps: 
• We tried the free version of the verbally app which had several common words you could click on. Unfortunately with the free version you cannot customize phrases and the paid version is very expensive $99. The main reason this app didn’t work for Chica is that the text was too small in the ipad mini for her to read. 
• TouchVoice: this app had very big letters that were easy to use and also had many useful short phrases to click on. It was $20 but it ended up being worth every penny. I think this app would be very useful for any other with speech impairments like from stroke or ALS. 
• TTY telephone: It took a very long time to get a TTY telephone from the state of Texas. When it finally came it was not as easy to use as Chica needed to use one hand for the head set and type with just one hand. But it is nice to know you have an option to communicate. 
• Apple FaceTime: This has worked nicely as it is as close to talking to Chica in person and we get to see her lips moving and some other non-verbal language and it is relatively easy for her to use. 
• Electrolarynx: Because of previous scarring from radiation therapy and the skin grafts Chica has to use an electrolarynx with an oral adaptor. It was very frustrating at firs for her to get words out as it requires for you to exaggerate your mouth movements 
• Good old pen and paper: what can I say you just write what you need. At first this wasn’t an option because of the 3 weeks Chica had her right arm in a cast. 

6. Caregiving sandwich, learning to say No! And letting go 

I am also the parent of a high school freshman and a 4th grader and found myself just barely getting everything done. I usually like to feel like a very bold an empowered woman who can do it all. I had to get better about saying NO this is interesting but I can’t do that at this time! I also had to let go of things that are usually somewhat important to me like making the bed. And yes we ended up eating a lot of to go food but so what! Don’t judge me.

I also learned to ask for help. My colleagues were wonderful in helping with some of my duties of clinical coverage so that I could take 1-2 days during the week to be with Chica at the hospital.

7. Caregiver as a cheerleader

Rehabilitation is hard and without loved ones cheering you on it would be easy to just do nothing. When you are so worn out and deconditioned from a prolonged hospital stay even small things like getting out of bed and walking within the hospital room seem to be big chores. Chica’s three occupational therapy objectives were seemingly simple #1 to go to the bathroom by myself  #2 to take a shower by myself and #3 to go home to Rockport. The objectives #1 and #2 were achieved prior to leaving rehab, #3 took a few months but she did it!

Chica said she felt very encouraged when we were there being supportive and cheering her, like when we asked her to get out of the room and walk to the nurses station and then clapped and celebrated with her when she actually did. As a family we got organized to take turns so that Chica would have a companion every day in the hospital. Some of my family members had to use the FMLA benefit at their work.

8. Live where you are happy

Initially when we had met with the ENT we asked about his thoughts of Chica returning to live by herself after having a laryngectomy. He said he would not recommended. Thinking about not living on her own was very disturbing to Chica and she struggled with it but made peace of the idea of having to sell the house and relocating closer to family in San Antonio. The whole rehabilitation process was very long and she temporarily moved in with one of her daughters. However after a few months she went back home to Rockport and had a person who had been housesitting stay with her. She was very happy to be back with all her friends. Her friends were patient in trying to understand her using her electrolarynx or even writing like in a loud restaurant. Eventually Chica decided to stay put living on her own. We knew this may not be as safe as having her closer where we could help but living on her own was definitely was the happier option.



9. Crazy and hectic times can be good!

In the middle of all the craziness these were both the best and the worst of times. Here are some examples of touching moments:

• Seeing Chica saying goodbye to her brother right before surgery and telling him “you are the best brother ever and I love you!
• Joining hands and praying together as a family for Chica’s healing and for the health care professionals caring for her.
• All the family in the waiting room while Chica was undergoing her 7 hour surgery.
• We are closer and spend more time together as a family.
• Hearing Chica one of the first times use the electrolarynx to say “Hello everyone I love you” and saying to her ENT “thank you for saving my life.”
• Chica has new heroes: many doctors but in particular her ENT who took the cancer out and the cardiologist who had to cardiovert her after going into atrial fibrillation. The nurses who were always so kind and supportive. The chaplain and priests who prayed with her and help her lift her spirits.
• Greater appreciation for the simple things in life! Breathing through your nose, speaking, eating, going to the bathroom, all this things that we give for granted all the time

Dr Jeanette Ross is a Geriatrician and palliative medicine specialist in San Antonio. You can find her on Twitter @rossjeanette

Photos credit: David Ross

Tweet

by Debra Parker Oliver, MSW, PhD and Jessica Oliver Tappana, MSW

I have worked as a hospice social worker, administrator, and researcher for 35 years. I now find myself a hospice caregiver for my husband who has Stage IV cancer. Despite my professional experience, I have had to learn many things about being a caregiver. Perhaps one of my most important lessons has been the unexpected experience of feeling “crazy”. I find my day-to-day reality is often in contrast to others around me, leading me to question my sanity. This is a new and unfamiliar distress not found in caregiving literature. It is however, not unique as I have heard these feelings and frustrations expressed many times by other caregivers in my support group encounters.

It is the stark contrast between my daily experience as my husband’s caregiver and the well-meaning comments of numerous friends and medical professionals that gives me pause, causes me to question myself, and leads to a “crazy” feeling. I live the reality every day of watching my husband, the man I have known and loved for two decades, change before my eyes. The marathon runner I know is now unable walk more than 50 feet, uses oxygen to breathe, grimaces while swallowing, and awakens with pain in his head. Yet, those who we encounter will say, “You look good”. This is especially distressful when the person saying it is a health care professional. Those three words tell me that I must be imagining or dramatizing the situation, that in fact I am crazy. As I worry and question the physical decline of the man I love, I hear the doctor summarize our visit saying, “I think you are doing great”, and I again ask myself, “am I crazy?”

A healthcare professional encounters a patient for perhaps an hour each week or every few weeks. I see my husband 24 hours a day, 7 days a week. Yet, during most conversations about his illness, I am not asked about my observations, I am not asked about my thoughts or feelings, he is the center of the experience. However, unacknowledged in this patient only centered approach, is the fact that there are challenges with my husband’s reports. For instance, there are times he doesn’t remember something. Most problematic with his reporting is his tendency to minimize his symptoms. Like many patients, he doesn’t want to complain, to be a bother, and he doesn’t want to appear to be a “bad patient”. In that office encounter, I hear him respond to questions by saying, “everything is fine, I’m doing ok”, again I feel crazy. Despite being able to fake it for a short encounter with a nurse or doctor he can’t fake it for the family. Like me, despite his impression management our children see the grimaces, notice the increased sleep and fatigue, and tell me they see changes between their visits. So maybe I’m not crazy? One helpful solution would be for the physicians and nurses to engage me in the visit, encourage my input, and encourage me to share my experiences and observations. But this is only part of the formula, for without making me feel heard, I will still silently imagine I am crazy.

How can healthcare professionals circumvent family feelings of “craziness”? Dr. Marsha Linehan, creator of dialectical behavior therapy (DBT), contends that to help someone experiencing psychological distress it is important to first validate the person’s experience and communicate an understanding of the person’s perspective. The idea is to listen and recognize the distress and then acknowledge the right to “feel” that distress, thus normalizing the feelings.

Dr Linehan identifies 6 levels of validation that can be used to improve the helping relationship. In summary, by first communicating that one is listening and understands, then problem solving, closeness, trust, and support become possible. Validating does not necessarily mean agreement. It is simply acknowledging a person’s emotions, thoughts and behaviors, respecting that those emotions have causes and communicating they are understandable. It is a very powerful tool in the building and maintaining of a helping relationship. I believe that if the members of our health care team used more validation, caregivers would experience significantly fewer moments of feeling “crazy.” The levels of validation identified by Dr. Linehan and described below take only a minute to use in conversation but can make a big impact.

Level 1: Pay Attention. This is done by giving the individual undivided attention, looking interested, listening, staying focused and responding with appropriate facial expressions. For example, the nurse who leans forward to hear me speak, grimaces when I share something painful and nods occasionally as I speak. At its most basic level my feelings are recognized and acknowledged, I know that I was heard, even if a word is not spoken.

Level 2: Reflect Back. In this case the provider reflects the thoughts and feelings they heard to insure understanding of what was said, without any judgment in tone or language. The doctor for example repeats what is heard, rather restating the words. “I hear you telling me that you feel very anxious that your husband is not getting better.” I know I was heard and the doctor helped me by reflecting it back, giving me a label for the feeling.

Level 3: ”Read Minds”. This level involves looking just under the surface at what is not said. For example, at the end of a long visit where I’ve voiced several concerns, the nurse might say, “You are feeling more and more anxious as the symptoms increase.”

Level 4: Understand. The fourth level of validation puts the person in context with their individual past experiences. In my particular case, the doctor might say, “I understand given your years in hospice why you are concerned with your husbands weight loss, that is understandable.” With this unique context, I feel understood, get a sense of why I feel anxious, and have permission for my feelings, thus I am not “crazy”.

Level 5: Recognizing the valid. In this level, the provider acknowledges that most people would have the same thoughts or feelings given the current reality and facts. Knowing that other people feel the same way not only means my feelings are understood, but also my feelings are not unexpected or out of the ordinary. In this case the nurse might say, “Its very normal for you to get anxious when you see him so uncomfortable.”

Level 6: Show Equality. The final level of validation involves treating the person as a real person rather than a person with a specific problem who is unable to resolve it. The simplest example of this would be the doctor who turns to me after my husband tells them about his week and asks, “What have you noticed?” I feel not only listened to, but believe my opinion is of value and, I am viewed as a member of the “team.” I do not feel crazy.

I urge hospice and palliative care team members to find as many ways as possible to validate the feelings of caregivers. Listen for the feelings behind the words, openly recognize the feelings, give them reassurance they are normal, and give them confidence they will be ok.

References:
Linehan, Marsha M. (2015) DBT Skills Training Manual Second Edition.* New York: Guilford Press.

For more great reads about social work see these other Pallimed posts.
For more on caregiving from Pallimed, click here.

*Amazon Affiliate Link

Tweet

If you’ve ever helped as a caregiver to someone in the twilight years of their life, or perhaps you yourself are at this stage, you may have noticed when it was medication time that there were a lot of pills. It is true there are exceptions to this rule, those individuals who only take one or two medications a day. However this is the exception, and there doesn’t seem to be much middle ground. Either you are on pages worth of medication, or hardly any as you begin to enter the last stages of life.

The first question is, how does this happen? A large culprit to this phenomenon stems from the expectations for the doctor/patient encounter. When a patient comes to see a provider with a specific complaint, they expect a remedy. The unspoken words from every patient are “fix me”. While most complaints aren’t easy to alleviate quickly, culture demands instant relief. Thus, handing out a new medication for a complaint certainly feels like the problem has been addressed. This is not much different to what happens when my 3 year old skins his knee. He has been enculturated to believe that with any scrape a Band-Aid is the ultimate solution. As a parent, I can tell that most of his injuries medically don’t need Band-Aids, and yet when I relent I’m amazed at the immediate soothing effect it has because something has been done to “fix” him. Medications at times are like Band-Aids, they may not be essentially needed, but we expect something from them, and so in turn, they pacify us.

The next issue with medications is the tendency that once started they are never stopped. Someone comes into the hospital for knee surgery and complains of indigestion due to anxiety about the surgery, so an antacid is prescribed. The person is discharged with the new medication, and years later are still taking it, despite not medically needing it. When I put a Band-Aid on my 3 year old, it takes some convincing after a day that I can remove it, because he is now healed. How funny it would be if we left Band-Aids on indefinitely, never evaluating if the injury healed. Yet this is often the case for pills, started by other specialists, or for specific reasons in the past, we trust their benefit, like the Band-Aid, without pondering if still needed.

When it comes to end of life, the harm of over prescribing and not eliminating medications is something called ‘pill burden’. Patients fatigued from their disease and having more difficulty swallowing become burdened by the handful of medications we expect them to take. Many pills can be eliminated because of the above scenarios, but even more can be stopped when we evaluate why someone is taking the pill in the first place.

Many medications prescribed are preventative, meant to stave off unwanted future risks. Some of these drug classes are blood thinners, cholesterol lowering agents, blood pressure medications, dementia medications, and all vitamins. These agents are meant to prevent things years in the future, so it makes no sense continuing them on hospice when time is limited.

Pill burden doesn’t just occur at the end of life. It’s okay to be an advocate and sit down with your physician to discuss the necessity of medications prescribed. The key is to ensure the pills you take are working for you, because it can be work to take them in the first place.

Dr. Clarkson is a hospice physician for Southwind Hospice in Pratt, KS. This post was originally published in Dr. Clarkson's End Notes column for the Pratt Tribune.  It is re-published here with the author's permission under a Creative Commons license.

Photo Credit: iStockphoto

Tweet

In the face of a crisis, many people are challenged to find constructive and meaningful ways to engage in conversation and so often they fall back on platitudes. Simple, hopeful, semi-philosophical phrases we have heard in many other situations may sound important to the speaker, but the receiver finds them meaningless and tone deaf. I'm sure you have heard many of these uttered to patients by well-meaning family friends, and even health care professionals:

"Limp, anemic sentiments will not stand in the face of a world that is not as it should be."

Pyle explains that this phrase is often sourced to the Bible but the original statement is about temptation not suffering.  I think this is a great post to bring to team and discuss how we as professionals who see the intersection of suffering and spirituality everyday deal with statements like this. I posted the article earlier this week to the Pallimed Facebook page, and it garnered a lot of responses.  Here is one that I think many in palliative care will agree with:

Call it what you will, but someone people hang on to this for their hope and sanity. Even though I agree with this blog, even his blatant use of calling it what it is, sometimes to "correct" those (in the moment) who are holding on to this falsity as their hope and sanity, it is equivalent to pulling the chair out from under them.

When you hear, "God doesn't give you more than you can handle," how do you respond?

H/T to Rick Bauer (@nvrflycoach) for posting the original blog to Twitter
Photo Credit: Not attributable after using Tin Eye Reverse Image Search

Tweet

 Most health care providers are in a hurry and have little time to devote to reading medical articles. Often browsing just the title and summary, they want to know, “what does this mean for me or my patients?” They have little time to get into the details of how the study was done, who participated, or even the results. This short post is an attempt to demystify the research process to encourage health professionals to seek more from the studies they read and to pass on these findings to others in the field who can make a difference. As an illustration, I will use a recent publication from our research team that appears online at the Journal of Pain and Symptom Management, “I’m not a doctor, and I don’t know if I helped her go faster or slower”

The research, funded by a government grant, began long before the article was published. Our team began thinking about and writing the proposal for funding in the fall of 2008. It was submitted to the National Institutes of Health (NIH) six months later, where it was reviewed by experts. These people were skilled scientists with a wide variety of knowledge and experience. They returned our proposal to us with recommendations for improvement; research proposals are rarely funded the first time without changes. NIH accepts proposals on three dates each year, so we revised and resubmitted our proposal at the next possible opportunity. It was reviewed positively in February 2010. At NIH, reviewers give proposals scores – and this time our proposal’s score was good enough to be funded! We were finally awarded funding (that is, given the money!) in July 2010. By that fall we began gathering the data. Finally, two years later (Fall 2012) we had sufficient data and findings to write our paper. FIVE YEARS from the initial proposal requesting funding to data collection to data analysis to paper writing to publication.

Getting funding to do research and collecting data is hard work, but just the beginning! Analyzing the data is an important process and, in this case, involved the participation of our entire research team. We all read and interpreted interviews that had been typed up. As first author, I integrated the work of the others into a first draft of the manuscript. After many emails and drafts, the team submitted our article to the journal. The journal then sent the paper to three experts who carefully read the paper and made several recommendations aimed at improving our paper. This “peer review” is a very important part of the process, and helps maintain high standards for research publications. Based on these recommendations, our team revised the paper and sent it back to the journal. The journal approved of the changes we made, and the paper was published online May 2013, six months after initial submission.

It is gratifying to know that peer-reviewed research has scientific credibility, but the real test is whether or not it makes a difference in the lives of patients and families. For example, our study has considerable more value if it gets into the hands of hospice staff, the ones who, on a daily basis, can help caregivers manage the pain of their dying loved ones. But many hospice staff never read medical journals, and are often unable to attend conferences, another place where the results of studies like ours are presented. In short, research findings need to translate to the bedside. Years of hard work to produce information that can improve practice deserve attention. As scholars who produce research findings and health care professionals who read them, we have a responsibility to share important results to those who can implement them.

This post was written by Debra Parker Oliver with contributions from The Caregiving Network Research Team (Elaine Wittenberg Lyles, Karla Washington, Robin Kruse and George Demiris)

Photo Credits: Unknown

Tweet

Tweet

We are fortunate enough to have two back to back contests to give our loyal Pallimed readers.  We just announced our winners of our first contest and now if you were not able to go to Chicago you can enter this next contest, because you can just stay home.


The Metta Institute is giving two lucky Pallimed readers a complimentary individual registration for their May 3rd teleconference "Being with Dying" with Joan Halifax Roshi, a Zen priest, Founder and Co-Abbot of the Upaya Zen Center (Twitter: @UpayaZen) . The teleconference will focus on "Being with Dying" and the essential role of compassion in caregiving. She has worked in the area of death and dying for over thirty year and has been a keynote speaker at NHPCO and AAHPM national conferences. The cost of the teleconference is $25 for individuals or 10 for $150.

To enter for one of the two registrations you have three simple ways and each time counts as an entry:

1. Add a comment to this blog post.  The content is not critical but if we want to start a discussion of mindfulness and compassion in caregiving that would be topical! If a discussion really gets going that could be a lot of entries.
2. Tweet about the conference/contest: Examples: 
• "Hoping to win the @Pallimed Contest for the Metta Institute teleconf with @jhalifax #hpm" 
• Just make sure to include the words '@Pallimed' and 'Metta' since that will be how I find your tweet for an entry!
• Yes you can follow Joan Halifax Roshi on Twitter at @jhalifax
3. Comment on the Pallimed Facebook Fan Page about the contest either on the post mentioning this contest or just in general. Content is not important but again start a conversation and each comment is an entry.

Winners will be announced on the Facebook Fan Page at 3pm Central.  Winners will be asked to blog about the conference and will be posted here on Pallimed to share what you learned.

Any feedback on these contest is appreciated either on this blog post or at christian@pallimed.org.  No money or goods were exchanged for this contest.  It is open to everyone except me including Pallimed contributors. You do not have to be a subscriber to Pallimed, nor a health care professional.