A Special Loss

Grief is inevitable in the death of a parent

 A parent's death is a difficult time, and often brings a particular type of grief. In an article for Caring.com, Senior Editor Paula Spencer created a list of reasons why this "a Special Kind of Loss":

1. Our parents are our "wisdom keepers." "We spend a lifetime looking to our parents for answers," says psychotherapist Sherry E. Showalter, author of Healing Heartaches: Stories of Loss and Life. They're the repositories of knowledge about our history, our upbringing, family traditions, the names of all those faces in old photos. With their passing so, too, goes the information and insight that hasn't already been transmitted or recorded.

2. Unresolved issues often follow the parent-child relationship into adulthood. The balance of the parent-child relationship shifts several times, first as we gain maturity and create our own families, and then as parents grow older and often need our support. These realities bring plenty of opportunities for misunderstanding or discord. And not all these bumps are smoothed out by the end. Differences that go unreconciled can leave a forlorn sense of unfinished business, Showalter says.

3. Parent death always feels sudden -- even when it's not. People often expect that the death of someone older or someone who's been ill for a long time will feel easier to endure because it's predictable. Yet the disappearance from your life of a figure you've known since birth is, when it finally happens, always a sudden change.

4. Decisions about rituals are up to you. "Suddenly you're the adult preparing the funeral, the viewing, the obituary, the eulogy -- there's nobody older to tell you how to manage, no one to correct you or say, 'No, that's not how you do it!'" says one woman in her 40s who lost both parents within two years. "I felt pushed to a different level of adulthood."

5. Your children lose grandparents. Many people who lose their parents talk about "grieving for what won't ever be" -- being unable to ask their parents for parenting advice, for example, or having their parents attend their children's birthday parties, graduations, and weddings. Parents may also need to help their children mourn, or they may feel a need to preserve the grandparents' legacy for their children.

6. Losing the "buffer generation" forces us to reexamine our own mortality. When a grandparent dies, there's still a whole generation between you and death. With a parent's death, your own eventual demise may feel uncomfortably nearer.

While sadness is inevitable, hospice care can help by both improving quality of life and counseling the family before and after death, lessening the burden so that families and friends can better celebrate the life of a loved one.

Hospice Facts

More education means better decisions

Millions choose hospice care every year, but there are still many who could benefit from its services that do not because of a lack of information. The list below, from a Cumberland Times-News article, is a collection of important facts that everyone should know about hospice care:

1. Hospice is not a place but is a kind of high-quality care that brings the patient and family medical, emotional, and spiritual care and support focusing on comfort and quality of life.

2. Medicare beneficiaries pay little or nothing for hospice, and most insurance plans, HMOs and managed care plans include hospice coverage.

3. Hospice serves anyone facing a life-limiting illness, regardless of age or illness.

4. Research has shown that the majority of Americans do not want to die in a hospital; hospice treats pain and manages symptoms while allowing most patients to be at home.

5. Hospice also serves people living in nursing homes and assisted living facilities.

6. Hospice patients and families can receive care for six months or longer, and the greatest benefits are gained by being in hospice care for more than just a few days.

7. Less than one percent of Medicare beneficiaries live in an area where hospice is not available.

8. A person may keep his or her referring physician involved while they received hospice care.

9. Hospice serves people of all backgrounds and traditions; the core values of hospice-allowing the patient to be with family, including spiritual and emotional support, treating pain-cut across all cultures.

10. Hospice offers grief and bereavement services to family members and the community.

As you can see, hospice care encompasses a broad range of services and support systems. Because of this, it is the perfect choice for those facing end of life decisions.

Myths About Hospice

There are many misunderstandings about hospice care, from who is eligible to what happens after you enroll. Although primary physicians should be supplying this information, the reality is that many wait until it is to late to even mention the possibility of enrolling in hospice. Thankfully, there are articles like "4 Hospice Myths," from About.com, that help to educate and inform the public. A quote:

Myth #1: Hospice Care Means Giving Up Hope

Choosing hospice care in no way means a patient is giving up hope. It may mean redefining hope. Where a patient once hoped for a cure they may now hope to be pain-free. Hope for a patient may mean seeing a distant friend or relative one last time or taking the trip to the beach. Hope could be as simple as wanting to spend as much time with loved ones as possible, or remaining at home rather than having to go to the hospital or a nursing home.

Hope looks different in hospice care but it is certainly not lost. The hospice team can help patients accomplish tasks, fulfill wishes, and maintain hope.

Myth #2: Hospice Means That I Have To Sign a DNR

Having a Do Not Resuscitate order (DNR) in place is not a requirement to receive hospice care. Signing a DNR means that you do not want to be resuscitated with CPR or other means should your breathing or heart stop. While many patients on hospice elect to have a DNR in place, it is not the right choice for everyone. The goal of hospice is patient comfort with the patient directing care. No decisions should ever be forced upon patients, including hospice patients.

Myth #3: Hospice Is Only for Cancer Patients

In reality, 51% of hospice patients are admitted to hospice with chronic, non-cancer diagnoses. That means just under half of hospice patients have cancer. Some of the most common non-cancer diagnoses in hospice are heart disease, dementia, lung disease, kidney disease, and liver disease. The hospice team is very skilled at managing symptoms of cancer and equally skilled at managing symptoms of many other chronic illness.

Myth #4: Hospice Is Only for Patients who Are Close to Death or Actively Dying

If there is one myth that bothers me most, it’s this one. Because of the highly skilled care that hospice workers can provide to their patients, hospice works best when the team has time to deliver it. The dying process takes time. Patients and their loved ones need support, information, and medical care. Social workers and chaplains need time to work with patients and their loved ones to bring them to a place of acceptance. Nurses and doctors need time to get the patient's symptoms optimally managed.

The work of the dying takes more time than the average length a patient is on hospice. Currently, the average length of stay on hospice is only 14-20 days. It saddens me to think of all the care those patients missed out on.

Removing the stigma of hospice and redefining end-of-life care is essential to the future of health care. The population of seniors in the U.S. is expected to double in the next 30 years. That means more people will be living with chronic, life-limiting illness that need expert end-of-life care. Dispelling these myths about hospice can bring us one step closer to providing quality, highly skilled care to patients at the end of life. 

There are more resources available for free on the Web. A good place to start is our own home page, Hospice Care Corporation, or just type "hospice care" into your search engine of choice.

Choosing End-of-Life Care

Make your care choices in advance

A new type of program is making it easier for people to make their own end-of-life health care decisions, removing the stress and pressure from families and loved ones. A recent Wall Street Journal article described these programs, called "Polst":

The programs are known as Physician Orders for Life-Sustaining Treatment, or Polst. They are meant to complement advance directives, sometimes known as living wills, in which people state in broad terms how much medical intervention they will want when their condition no longer allows them to communicate. A Polst, which is signed by both the patient and the doctor, spells out such choices as whether a patient wants to be on a mechanical breathing machine or feeding tube and receive antibiotics.

Polst programs are currently in use in 14 states and regions, including California, Oregon and New York. Three states, Colorado, Idaho and Pennsylvania, adopted Polst programs recently, and another 16 states and six regions are developing programs. Besides providing documents that meet local regulations, the programs train health-care providers to discuss end-of-life treatment choices with patients with terminal illness or anyone wishing to define their care preferences.

Polst forms are recognized as official medical orders, giving them more weight than living wills and protecting medical personnel such as doctors or hospice care workers who might otherwise be held liable for the results of following a patient's orders. Anything that makes it easier to receive the type of end-of-life care that a person desires is good, and a nationwide Polst program could be just the thing we need.

Caregiver Trauma

Hospice reduces stress on caregivers too

 Hospice care doesn’t only benefit the dying. It also improves outcomes for their survivors as well, a recent study of cancer patients found.

Researchers from the Dana-Farber Cancer Institute found that patients who died in the hospital or intensive care unit experienced more physical and emotional distress and worse quality of life in the final months of their life than patients who died at home.

In addition, caregivers of patients who died in the intensive care unit were five times more likely to be diagnosed with post-traumatic stress syndrome than those of patients who died at home in hospice care (21 percent compared to 4 percent).

The study is based on interviews with 342 terminally-ill cancer patients and their caregivers. It was published last year in the Journal of Clinical Oncology.

This quote, from a Sun Times article, shows that hospice care is not only more beneficial for patients, but their caregivers as well. The intensive medical procedures taken in the hospital are costly and extremely stressful to all involved, evidenced by the fact that even caregivers are developing PTSD, a disorder often attribuited to those returning from war or surviving extreme accidents.

Hospice Nurses

What do they do?

When it comes to hospice care, the nurses are a critical part of the team. In an article for Prepared Patient, Amy Sutton listed some typical duties that a nurse would be responsible for:

• Greet patient and caregiver(s); the nurse may offer support to the patient and caregivers    privately during the course of the visit.
• Ask about appetite, energy levels and whether patient is experiencing pain or symptoms.
• Take patient’s blood pressure level, heart rate, weight, and other vital signs.
• Ask if medications seem to be helping or if they are causing problems.
• Assist patient and caregiver in obtaining medical supplies or equipment needed at home.
• Offer advice to caregiver and patient about what to expect next in disease process and when/how to request for special assistance.
• Listen to patient’s and caregiver’s emotional concerns and suggest/arrange assistance from a social worker or pastoral care.

As you can see, it is the nurse's job to help maintain not only physical comfort, but mental as well. In fact, this is the goal of the entire hospice team, and a large part of the reason why hospice is so effective.

The Advantages of Palliative Care

Live better, longer

While closely related, palliative care differs from hospice care in that, though it also addresses patients facing life-threatening illnesses, the service is available to those who are still actively seeking medical care. Just as with hospice care, palliative care has been shown to extend patient's lives and greatly reduce pain and suffering. Need proof? Just take a look at this quote, from a USA Today article by Liz Szabo:

A study of 151 patients published last summer in The New England Journal of Medicine showed that getting early palliative care — in addition to regular medical treatment — helpedpeople with lung cancer live three months longer, compared with those given standard care.

In comparison, chemo can give newly diagnosed lung cancer patients an extra two to three months of life, says study co-author Thomas Lynch, director of the Yale Cancer Center.

"If this was a drug, this would be on the front page of every paper in the country, talking about 'New advance in lung cancer,' " Lynch says.

But palliative care patients didn't just live longer. They also lived better, with less depression and a higher quality of life, he says.

Studies like this are the reason palliative care is getting some long-deserved attention. Thanks to the winning combination of comfort and treatment, patients and their families are able to enjoy more time together.