Source: James McGregor, MD
The National Hospice and Palliative Care Organization (NHPCO) reports that, based on surveys, the majority of Americans would prefer to die at home. In contrast to this preference, only 25—30 percent actually do so. Why this discrepancy?
Hospice is intended to help patients die at home with love and dignity. Many physicians say that they are reluctant to refer patients to hospice because they do not want the patient to lose hope or do not think the patient is “ready to die.” There is a widely held belief in the medical profession and in the community that hospice and palliative care hasten death. Is this belief true?
A retrospective study published in the Journal of Pain and Symptom Management showed that enrollment in hospice extended life by 29 days compared to other more aggressive treatment. The study reported longer lengths of survival in 4 of the 6 disease categories studied. The largest difference in survival was observed in congestive heart failure patients, where the mean survival period jumped from 321 days to 402 days. The mean survival period was also significantly longer for hospice patients with lung cancer, 39 days, and pancreatic cancer, 21 days.
Physicians may not refer to hospice and palliative care because they are afraid of taking away the patient's hope. The question arises then: what hope is offered by pursuing aggressive therapies that may in fact shorten life and increase suffering?
It is false hope. Hospice and palliative care offer real hope to patients and their families by providing:
- Pain and symptom management to minimize suffering at the end of life
- Emotional support to help patients and families address their fears and worries so that life can be meaningful up to the end
- Assistance with activities of daily living
- Spiritual care to help patients and families explore the meaning and purpose of life and death
Rather than be reluctant to refer patients to hospice and palliative care programs, physicians should partner with these services to provide the best care possible to patients facing a life-limiting illness.
Source: Insight for Caregivers
According to the National Institutes for Health, 27 million Americans are currently living with kidney disease . Many dialysis patients respond well to dialysis over a long period of time. But, at some point, a dialysis patient may conclude that continuing dialysis is not resulting in a quality of life they find acceptable and may decide to withdraw from dialysis.
Once the patient has discontinued dialysis, hospice care can provide positive support for patient and family alike. During this last period of the patient's life, hospice care helps manage the physical, emotional and practical issues involved.
Hospice is a philosophy of care that focuses on comfort care rather than providing care to cure. The goal of hospice is to help people experience the end of life with peace and dignity. The hospice team will see that the patient receives the appropriate pain medication, treatment to relieve symptoms caused by fluid build-up, and other palliative measures to make the person as comfortable as possible. And physical care isn't the only important way the hospice team supports the patient and family. Withdrawing from dialysis is most often an emotionally difficult process—so hospice services at this time are very inclusive. Hospice workers can help with advance directives and with the emotional and psychological issues that come with making this decision and with the end of life process.
Hospice team members include physicians, nurses, social workers, care aides, chaplains, volunteers and therapists. The hospice team works with patients to set up a plan of care that meets individual needs. Families receive support as well as bereavement services. Hospice care ultimately affirms life by providing the comfort that helps make the natural process of dying a more meaningful one for both patients and families.
A patient with End Stage Renal Disease who opts to end dialysis can receive hospice care through the Medicare Hospice Benefit, the Medicaid Hospice Benefit, or through a private insurance carrier. Many hospices will provide free care for patients who do not qualify for any of these benefits.
How Hospice Can Help
Source: Linda Freda RN, MSN, CHPN
It’s an ongoing challenge for hospices throughout the country to educate their communities on how hospice can help those with end-stage heart disease. Although heart disease is still responsible for the most deaths nationwide, only about 12% of hospice patients have this admitting diagnosis.
For those who are weakened by a failing heart, hospice offers valuable services that can help them live more comfortably, supported by a specially trained health care team.
Hospice physicians and nurses help with relieving pain and shortness of breath and the sleeplessness, anxiety and depression that commonly develop. The medical team coordinate appropriate medication management and can also determine which medical equipment may be needed. Most cardiac and symptom management medications as well as assistive equipment are covered under the Hospice Medicare Benefit, and the nurse can arrange for home delivery. The hospice nursing assistant can help with personal care when needed and the social worker and chaplain help with the supportive emotional and spiritual care for both the patient and the family.
Heart disease is usually a long-term chronic illness that has it ups and downs over the years. It’s time to call hospice for an evaluation when some of the following late stage indicators are present:
- Ongoing weakness, fatigue shortness of breath and /or pain
- Symptoms can no longer be managed by heart medications and are becoming more frequent, even at rest
- Increased dependence on others for activities of daily living
- Frequent hospitalizations
- Presence of other conditions such as respiratory illness, diabetes, kidney disease, etc.
A conversation starter for a meaningful discussion may be a simple statement such as “I’d like to talk about what kind of help we may need since my/your heart failure seems to be worsening.” It can be a great relief to all when the door is finally opened to talking about needed care and then allowing the hospice provider to plan an assessment visit.
Death and Dying – How Social Workers Help – The Role of Social Work in Hospice and Palliative Care
Source: Mary Raymer, MSW, ACSW
Social workers are a core service on hospice and palliative care teams. Their professional values and skills are a perfect match with hospice and palliative care programs, which are designed to treat the whole person in an interdisciplinary manner to enhance quality of life during challenging times.
Social Workers assist individuals and families in the following areas:
- Symptom Management. Physical symptom management, such as relaxation exercises to help with nausea or pain. Psychological/spiritual stressors such as anxiety, guilt, or depression can be addressed and managed through counseling, education, or short-term psychological techniques.
- Ethical Dilemmas. Ethical dilemmas may also arise, and social workers are adept at problem solving, advocacy and facilitating the proper resources to find solutions that are helpful for each family.
- Financial Stress. Social workers are extremely knowledgeable at helping people navigate resources such as health insurance coverage, medical costs, and bills, or accessing disability income.
- Advance Care Planning.. Advance care planning entails making decisions about treatment in end of life care and funeral planning, and communicating this with loved ones and in legal documentation.
- Grief and Bereavement. Social workers have information and skills that help facilitate grief and help people avoid obstacles that can lead to more complicated reactions like depression
As a part of the interdisciplinary team, social workers represent the individual/family's wishes at every team meeting and advocate to ensure that each family receives care that is hand tailored to fit their needs. After death, social workers provide bereavement information, education, and support to help survivors cope with the death and the subsequent adjustment (“new normal”) to a life without their loved one. They are an integral part of the hospice/palliative care team.
Our Social Work Team at Old Colony Hospice
If you woke up tomorrow in intensive care, or were told you had only months to live, would you want the most aggressive care available? Or would you accept the inevitability of death and hope for the best quality of life in your remaining time?
If you couldn’t speak for yourself, which option would you want your family or friends to choose for you, and whom would you want to make that decision?
Most hospitals and doctors’ groups encourage patients to think through these decisions and draw up advance directives----instructions that explain a person’s wishes and designate a medical decision-maker.
But can a piece of paper signed while sitting in a lawyer’s office or living room really reflect what someone might feel lying in a hospital bed hooked up to tubes and monitors?
-Karen Weintraub, "Making the Toughest Life Decision" Boston Globe, 2/20/12
These are certainly questions we all must consider. The real difficulty for many lies in initiating the conversations with our loved ones to begin the process of finding the answers to end of life questions. We want to know when to shift the focus of medical care from active treatment in order to prolong life, to supportive care involving pain and symptom management in order to protect the quality of life. These decisions involve careful consideration of how much we are willing to endure in the way of medical treatments and how we would ultimately like to spend our last days.
These conversations and the resulting advance directives can be very helpful to families because they know they are making decisions consistent with the wishes of those in their care. If our loved ones actually tell us what they want, it is easier to make decisions even if family members disagree.
As individuals, we should also be aware of these questions and let others know our wishes should disaster strike. Of course, every situation is different, and people can always change their mind---so these conversations must be ongoing.
Old Colony Hospice is pleased to reveal the third panel of our Memorial Quilt.
The Memory Quilt was created to offer families and individuals the opportunity to remember their loved ones through a memorial remembrance.
Old Colony Hospice Volunteer, Betty Ann Doherty got involved with The Memory Quilt by creating a square in honor of her mother-in-law who was cared for by Old Colony Hospice. When Betty learned of other families interested in creating a square in honor of their loved ones but didn’t know how to quilt, she quickly stepped into action by offering to make the squares for them.
“I made the square to honor my mother-in-law and to honor the nurse and the staff who cared for her. If it weren’t for them, my mother-in-law wouldn’t have lived as comfortably in her last year.”
These beautiful works of art travel throughout the 43 towns and cities served by Old Colony Hospice and can be viewed in various public venues. Toni L. Eaton, RN, President & CEO has watched the quilt grow from the very first square. “The Memory Quilt was created in honor of our patients and help to bring comfort to our families. Each square tells a special story. It was always my hope that this beautiful artwork would bring comfort and peace to our families but I had no idea just how much.”
Click here to learn more about the quilt and view the schedule. Please contact Toni Eaton at 781-341-4145 - TEaton@oldcolonyhospice.com with any questions.