Bereavement Groups

Helping each other

Bereavement groups can be a great help to those in the grieving process, especially after the often-painful loss of parents. By giving participants others to speak to about their experience, bereavement groups help to make a difficult time more bearable.

This quote from a Detroit Free Press article explains more of what these special groups do:

Bereavement support groups aim to help participants understand that crying is normal, grief takes time and death can actually change relationships for the better. Many survivors are forced to transition to a new adult identity. They often must be more confident in the decisions they make. They must be more responsible because they don't have Mom or Dad as a fallback.

Those are big changes to go through, and bereavement counselors say they want people to know they don't have to go on that journey alone.

Moving on doesn't mean forgetting, but continuing to live life. A standard offering at many hospitals and hospice care programs, bereavement groups are a great resource for this purpose, while helping participants honor those who've gone before.

Palliative Care Works

Hospital and palliative care can be a powerful combination

Palliative care involves the treatment not of diseases, but the symptoms that come with both them and certain treatments, as well as the mental health of patients and their loved ones. This quote from a BendBulletin article explains:

The goal of palliative care is simple: Improve the quality of life for people who are dealing with serious chronic or life-threatening medical problems. People with diseases such as cancer, congestive heart failure, HIV/AIDS and kidney failure often have tremendous problems with pain, shortness of breath, fatigue and nausea, among other symptoms. Especially in a busy hospital, it’s challenging to keep these patients comfortable and pain-free and to help them deal with the difficult medical and personal decisions they may face. That’s where palliative care comes in.

More than fifty percent of major hospitals now feature their own palliative care programs, and where they don't the gap is often filled by charity or not for profit groups.

Not only do these programs help make patients more comfortable, they save lives. It's known now that mental health plays a major role in our physical recovery process, and the potent combination of pain/symptom management and counseling, spiritual or otherwise, ensures there is less trouble on that end so that the doctor's efforts on the physical side can be as beneficial as possible.

Help the Grieving

Tips for those who want to lend a hand

Caring.com is an excellent resource for end-of-life care information, and frequently puts out articles like this one, by senior editor Paula Spencer, that seek to help anyone encountering the hard questions that inevitably come.

5 Simple Ways on How to Help Someone Who's Grieving  

by Paula Spencer

Feeling helpless about how to help a friend or family member who's mourning a loss? Small acts speak volumes. Here's how to help someone who's grieving, in simple, thoughtful ways:

1. Listen.
 
There's no need to rush in with words of comfort, especially if they don't come naturally.

Better: Simply make a space, with your companionable silence, for the bereaved to express herself if she chooses.

2. Don't hurry an emotional moment.
A common impulse when someone gets choked up with grief is to change the subject and try to shift to safer emotional ground.

Better: See the moment through. Pause. Offer a hug. Share your own comment about the person who died, if it feels appropriate.

3. Talk about the person who died.

Don't avoid mentioning the person who died; he or she is still very much in the minds of grieving family and friends.

Better: Reminisce or mention how the person inspired you or made you happy. When they naturally come to mind, don't be afraid to say things like, "Wouldn't Susan have loved these flowers?" or, "I can just hear Bill saying, 'It's a great day for golf!'"

4. Stick to honesty over platitudes.

There's no "right" thing to say to a survivor, but there are plenty of wrong things, like these 10 things never to say to someone who's grieving.

Better: If you're tongue-tied, acknowledge it. Try, "I don't know what to say. Please know I'm thinking about you." Or, "I can't imagine what each day is like for you now. I'm here for you."

5. Don't ask how you can help; just do.

Asking even simple questions ("Do you want me to pick up milk for you?" "What do you like to eat?") puts an added burden on the bereaved. Especially soon after a death, someone who's mourning may be physically and emotionally incapable of such decision making.

Better: Simply step in when you see a need: Furnish a meal (ready to eat or freeze, in disposable containers that don't need to be returned), organize regular meal delivery, pick up milk or eggs or fresh bread when you're at the store and leave them in a cooler on the porch, mow the lawn, take care of the car pool, stop by to walk and feed the dog. Think of essential tasks that can be handled unobtrusively.

Therapy Rabbits

More cuddly creatures joining animal therapy forces

Ninety-year-old Jean Doan beamed as little Ruby settled into her lap, and she smiled.

It was exactly the reaction patient care nurse Sandy Dowling had hoped to see.

"So many of our patients are elderly, and they can be afraid of cats and dogs," she said. "Rabbits tend to be more calm, and they usually are good about staying still."

Ruby, an 8-week-old rabbit, has joined the team at Compassionate Care Hospice, based in Bartow.

This quote, from a Newschief.com article, tells of an exciting new trend in patient care. While animal therapy has been around for many years, dogs make up the overwhelming majority of certified animals, with a small smattering of cats as well. Now, thanks to their naturally calm and still manner and the fact that patients are much less likely to be allergic, rabbits are bursting onto the scene, creating smiles and reducing stress across the country.

Improving End of Life Care

Getting the care you want and need

Hospice care is playing a primary role in allowing people to get the type of end of life care that they desire. Here, we have an article from Statesman.com, that uses information from the Austin, TX area to demonstrate this fact:

Sometime ago, early in my practice in Austin, a patient, well-aware she was dying of her cancer, talked to me about how she wanted to die. She would be looking out at the woods behind her house with her family near, still sensing the pulse of life around her. Her wishes were realized, and we can say she "died in place."

As important as it is to complete our wishes about the circumstances of our death, this often does not happen. Circumstances conspire to impede our wishes, and we die in the hospital or in pain, or more often than necessary, both.

Yet, as we shall see, it does not have to be this way.

That we have preferences about how we die is not in doubt. We have seen this in how we describe our deaths.

On a day last summer (Aug. 4, 2010) the following appeared on separate patients in the American-Statesman in the obituaries: " were at her side when she died ," " died peacefully with his family by his side ," " passed peacefully ," " passed away at his home ," and " passed away peacefully at home."

These sentiments are supported by a national survey of over 2,500 Medicare-age patients that indicated 86 percent wanted to die at home, only 9 percent in the hospital.

Yet we know that for cancer patients specifically, this is not how things play out.

A recent report of the Dartmouth Atlas Project (Nov. 16, 2010) showed that 29 percent of Medicare-age patients dying of cancer die in the hospital; 24 percent were admitted to the intensive care unit (ICU) in the last month of life.

Additional indicators of aggressive care were identified: chemotherapy in the last two weeks of life, low hospice admission rates and hospice admissions that occurred three days or less before death.

Moreover, project data indicate that aggressive care in these cancer patients does not mean better care.

A recent paper by a team led by Dr. Jennifer Temel of Massachusetts General Hospital reinforced this point.

In this study of lung cancer patients, one group received standard care, and the other group received standard care plus consultation directed toward symptom control and quality of life. This latter group received less aggressive care with fewer hospitalizations and more hospice enrollments. Notably, in this group, symptoms were better controlled, and family satisfaction was better. And these patients lived at least as long.

Cancer patients in Austin generally receive less aggressive care at the end of their lives than those in other areas in the country.

In Austin, 23 percent of cancer patients die in the hospital. Hospital days in the last 30 days of life are 4.4 with a national mean of 5.1; days enrolled on hospice are 10.6 with a national mean of 8.7. However, chemotherapy in the last week of life was 7.8 percent of patients with a national mean of 6 percent.

Patients in our own oncology practice also received less aggressive treatment than national norms.

Seventy-five percent of patients were enrolled in hospice at the time of death, with 58 percent dying at home, 28 percent dying at Hospice Austin at Christopher House. Over 80 percent of these patients had pain well controlled.

For patients not on hospice who died in the hospital, the last measurement indicated poorly controlled pain in 37.5 percent. A hospice enrollment of three days or less was associated with more severe pain levels.

The critical issue in this tension between wished-for and actual place of death appears to be communication.

A study of oncologists done in 2002 indicated that 37 percent discussed resuscitation orders at the time of diagnosis, 41 percent only when treatment was not working, 10 percent just before hospice referral and 12 percent a few days or hours before death. In contrast, 90 percent of patients want to talk about advance care planning at the time of diagnosis and want to discuss this while they are still well.

We know, from a recent study by a team led by Dr. Alexi Wright of Harvard Medical School, that if this conversation does not occur at all, patients are more likely to be admitted to the ICU and less likely to receive hospice care, while their families are more likely to have regret and a higher risk of depressive disorders.

The cancer community has recognized these shortcomings, and medical schools now more regularly offer courses in communication. There are also programs, such as Respecting Choices and Oncotalk, available to practicing professionals.

Hospital and Hospice

Care trends shift as patients and hospitals learn

Wheaton Franciscan Healthcare-St. Joseph started a palliative care program in 2004 with the goal of improving care for patients near the end of their lives.

The result: More patients are receiving hospice care in their homes and similar settings, and fewer patients are spending the final days of their lives in the hospital.

From 2003 through 2007, the hospital more than doubled the number of days that chronically ill Medicare patients received hospice care in the last six months of their lives.

The use of hospice care increased even more - 141% by the same measure - at Aurora Sinai Medical Center.

Most people would rather die at home, surrounded by loved ones, than in a hospital, attached to tubes and monitors. And a new report by the Dartmouth Atlas Project shows that those Milwaukee hospitals are part of an emerging trend to heed patients' preferences for the care they receive in their last days.

The growth in popularity of hospice care in the Milwaukee area, described here in a quote from a Sentinel Journal article, mirrors that in the rest of the U.S., as has been proven in studies like the Dartmouth Atlas Project and it's kin. While originally largely resistant, many hospitals now are embracing and integrating hospice care, partnering with area hospice programs or creating their own programs when others are not present. This bodes well for patients, as hopefully all will have a variety of choices for their end-of-life care, whether it be hospice or traditional medicine.

Conversations

Talking about hospice care

Caring Connections has always pushed for the best in end-of-life care, and their latest project is no difference. Titled, "Private Conversations and Public Discource: The Importance of Consumer Engagement in End-of-Life care," the report seeks to make public a subject that many, even those in health care, still find difficult to discuss. A Fort Morgan Times article has more details:

Private Conversations and Public Discourse is a call to action that encourages - and provides a framework for - a national agenda for consumer engagement in end-of-life issues. The call to action details eight specific areas that must be addressed, including:

Individuals need to talk about and document their wishes for care at the end of life.

Health care providers need to initiate honest, timely and culturally-relevant discussions with those for whom they are caring.

Policy makers need to eliminate barriers that prevent timely access to hospice and palliative care.

Employers need to support staff who are living with a serious illness or are caregivers or grieving.

The media needs to explore ways to demystify dying and help normalize the experience for the general public.

The stories of Karen Ann Quinlan, Nancy Cruzan, and Terri Schiavo are shared to help paint a picture of public discourse involving death. Past efforts to advance care at the end of life conducted on the national level are also cited.

The report was written and published by NHPCO`s Caring Connections, the organization`s consumer engagement initiative that provides free information on care, caregiving and community engagement. Funding for the report was provided by the Robert Wood Johnson Foundation, Princeton, New Jersey.

"Far too many people don`t have the information they need to make informed decisions about end-of-life care, " said Kathy Brandt, a senior vice president at NHPCO who leads Caring Connections. "We must not allow fear of the subject to discourage Americans from learning more and engaging in thoughtful discussions with family, loved ones, and healthcare professionals. The consequences of not understanding available choices are far more serious than many people realize."

People deserve the right to make informed choices about their health care, and without an understanding of those choices it simply isn't possible. Thanks to organizations like Caring Connections, more people will be able to make the choice that's right for them.