Monthly Archives: October 2013

Making the Call to Hospice

The doctor tells your loved one (the patient) and you (the caregiver), “You need to call hospice.” What next?

The doctor may give you the name of a specific hospice organization or, perhaps, several. You may choose whichever hospice you wish.

Should you choose to consider Hope Hospice for hospice care, we have two individuals who can meet with you and explain what hospice is and what it is not. Our community liaisons are Sarah and Carl. You can reach Hope Hospice at 314-984-9800 to schedule a visit with Sarah or Carl.

Sarah and Carl are experienced hospice care experts who have worked with numerous patients and families over the years. They have answered hundreds of questions from patients and caregivers. They know that while many patient situations are similar to others, each individual situation has elements that make it unique.

Similarly, while all hospice care organizations have things in common, each has its own characteristics. Hope Hospice is a privately owned, independent hospice. Hope is not part of a large hospital group. Hope is not a part of a national hospice chain. When a Hope Hospice nurse or other professional has a special need for a particular patient, approval from the owner is easy to obtain because the owner is right here in the office in St. Louis County.

We know that even after the doctor has said that it is time for hospice, you may be hesitant to make the call. This is understandable. You may want to wait a day or two to allow the gravity of the situation to register fully.

Rest assured that we have counseled many patients and families about what to expect from hospice. Expectations are frequently quite different from reality.

You may never feel completely comfortable about making the call to hospice. But when the time feels right, please call us at Hope Hospice and let us set up a visit for you with Sarah or Carl. Our number is 314-984-9800.

 

 

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Hospice Does NOT Mean “Giving Up”

When a patient is admitted to hospice care, does this mean that the patient and family are giving up hope? No. Going on hospice does require acknowledgement of a diagnosis that indicates a life expectancy of six months or less. But it does not mean giving up hope.

The name of our organization is Hope Hospice. Wikipedia defines hope as “the state which promotes the desire of positive outcomes related to events and circumstances in one’s life.” The key words in this definition are “positive outcomes.” Making the best of those “events and circumstances” that occur in life is what hospice care is about.

For our patients, our hope (there’s that word again!) is for a better quality of life through pain and symptom management. Going on hospice does not speed up the dying process. In fact, several research projects have shown that—for certain medical conditions—patients on hospice live longer than those who are not on hospice.

How does Hope Hospice provide hope (“positive outcomes”) to patients and families? We offer emotional and spiritual support, which can make the road to the end of life less bumpy. We help patients make the most of every day.

Our nurses and home health aids visit patients in their homes multiple times each week to monitor vital signs, deliver medications and supplies, ask important questions and provide a smile. Yes, a smile.

Because we often hear of celebrities going on hospice care and then dying within a couple of days, some people figure that hospice care is only for those last few days of life. Sadly, caregivers sometimes only call hospice after a patient has suffered pain for a considerable amount of time. Those who are admitted to hospice early in the end-of-life process are assured of less time spent in pain.

Yes, the people of Hope Hospice do provide hope for patients and families. For more information about what we can do for your loved one and your family, please call us at 314-984-9800.

 

Gail Sheehy on Being a Caregiver

If you find yourself suddenly the caregiver for a parent, a spouse, a partner, a sibling, you may be overwhelmed. Not only are there many new responsibilities, there is much mystery that lies ahead. Where do you go for help? Who can tell you what to do in this new role?

One source of useful guidance is the 2010 book Passages in Caregiving: Turning Chaos into Confidence by Gail Sheehy. She is the author of the 1976 book Passages, which helps define several phases of adult life. She now describes herself as “author, journalist, lecturer, advocate for caregivers.”

In Passages in Caregiving, she writes about the episodes in her husband Clay Felker’s slow demise. He died in 2008, seventeen years after his first cancer diagnosis. She writes about things she learned from personal experience, as well as insight she gathered from talking to other caregivers.

In the book, she identifies eight distinct “turnings,” starting with “shock and mobilization” and ending with “the long goodbye.”

Among her tips to caregivers is encouragement to take charge of the situation. She writes to caregivers: “How you handle this crisis will shape how you feel about yourself and almost certainly will change you in ways that follow you to the end of your days.”

She also tells caregivers, “We cannot do it alone. No one can.” She writes: “We need to grow a network of family, friends and veteran caregivers to help us understand what we’re going through and pitch in wherever they can.”

Of hospice care, Sheehy writes: “Caregivers often receive the most cherished benefit of hospice care. They and other family members almost universally express gratitude for being guided and supported through the mysteries of the dying process.”

As we at Hope Hospice tell patients and caregivers, every situation is different. But there are common elements that exist in most end-of-life experiences. Similarly, your caregiving experience will be different from that of Gail Sheehy. But by having walked that path, she is able to share her story (as well as those of other caregivers) in a way that can provide you a better idea of how to proceed.

If you are a caregiver and have questions about hospice care, call us at Hope Hospice at 314-984-9800.

(Passages in Caregiving is available from Amazon in a print edition and e-book. The Kindle version comes with several videos on the topic. It is also available in local libraries.)

Death: Not An Easy Thing to Talk About

Last year, writer Ellen Goodman launched The Conversation Project, a program to promote discussing end-of-life issues. With support from the Institute for Healthcare Improvement, Goodman, 72, initiated the project six years after her own mother died. Goodman writes: “We talked about everything except one thing: how she wanted to live at the end of her life.”

The Conversation Project released results in September of a survey it conducted recently. According to the survey, 90 percent of those surveyed said they want to talk about end-of-life care, for their parents and for themselves. But only 30 percent of those surveyed had actually had family conversations about how to handle end-of-life. Goodman’s thought: “It’s always too early… until it’s too late.”

Among those who had not discussed end-of-life care with loved ones, 29 percent said they didn’t need to worry about it yet. 23 percent said the reason was they weren’t sick yet. 21 percent said the subject makes them uncomfortable. 19 percent said they didn’t want to upset their loved ones.

About one-fifth of those questioned who had not had end-of-life discussions said they were waiting for another loved one to bring up the subject. 48 percent said that if a loved one did ask about their desires for end-of-life care, they would welcome a discussion of their wishes.

Ellen Goodman points out that the conversations about how a person wants to face the end of his or her life serve to bring comfort not only to the person facing death, but also to those who survive. “Death is still a hard loss, but you can reduce depression and guilt if [survivors] feel that they have done what the person they love wanted.”

The conversations also serve to preempt family discord over the way a parent’s end-of-life care is handled. Goodman says, “The last thing that you want as a parent is for your kids to have a huge falling out at the end of your life.”

As a hospice care provider, we at Hope Hospice echo the thoughts expressed by Ellen Goodman. Family conversations about end-of-life issues are sometimes hard to get started, but they are of vital importance.

Click HERE to download The Conversation Project’s Starter Kit. It can provide help for families who want to get a conversation going.

For questions about hospice care in general and for specific questions about Hope Hospice, please call us in St. Louis at 314-984-9800.