Brain tumor hospice timeline

Many Brain Tumor Patients Wait Too Long to Enroll in Hospice

Patients with incurable brain tumors, called malignant gliomas, could gain important benefits from early enrollment in comprehensive hospice programs, which provide valuable palliative care and caregiver support. But many of them wait too late to enroll, according to a study published in the October 2017 in the journal Neuro-Oncology.

The study’s investigators used the Surveillance, Epidemiology, and End Results (SEER) Medicare database, which includes more than 12,000 patients 18 or older who died following a lethal brain tumor diagnosis between January 1, 2002 and December 31, 2012.

In analyzing the data, they found that while 63 percent of these patients did enroll in hospice care, almost a quarter of them enrolled within a week of death — too late to benefit from what it offered, including comfort care, symptom management, and emotional support for patients and their caregivers near the end of life. Thirty-seven percent of patients received no hospice care at all before dying.

Malignant gliomas include a type of brain tumor called glioblastoma, which is very aggressive. Typically, patients with this type of tumor live for a median of 15 months. Five-year survival is only 5 percent for this form of tumor. Three- and seven-day hospice lengths of stay match quality of care minimum guidelines established by the American Society of Clinical Oncology, which has begun tracking them.

The study is the first population-based study that specifically focused on both hospice enrollment and length of stay in patients with brain tumors.

Related: Cancer: What Does It Mean to Get Palliative Care?

Older White Women Most Likely to Enroll

Of those enrolled in hospice at all, the median length of stay was 21 days. The study showed older patients, women, a higher level of education, being white, and having a lower median household income were important predictors of who took advantage of hospice enrollment.

When the researchers looked at lengths of stay of three or seven days, older age, female sex, and urban residence proved key predictors of people who used hospice longer.

“Older age makes sense to some degree, as comorbidities may preclude aggressive therapy,” says says Justin Jordan, MD, the study’s senior author and clinical director of the Pappas Center for Neuro-Oncology at Harvard’s Massachusetts General Hospital Cancer Center in Boston. “However, when one sees this list of differences, one wonders about differences in cancer-directed therapy, as well as end of life care in these populations.”

“We could and should strive to improve end of life care to make hospice services available to a larger proportion of the population,” says Dr. Jordan.

Related: Cancer Special Report 2017: Cancer Trends in Diagnosis, Stages, Treatment, and Survival Rates

Patients Should Seek Out Palliative Care, Too

“My initial reaction is that 63 percent hospice enrollment, and 89 percent for more than three days, is actually very good news as these statistics point to greater use and long use by those with brain cancer than on average,” says Melissa D. Aldridge, PhD, associate professor and vice chair for research in the Brookdale Department of Geriatrics and Palliative Care Medicine at Icahn School of Medicine at Mount Sinai in New York City.

Nationally, and across all terminal illnesses, about 40 percent enroll in hospice and about 65 percent of those people are enrolled for longer than three days.

Dr. Aldridge also says that patients and families should not forget to explore palliative care, which is care given to prevent or treat the symptoms and side effects of an illness and the treatment that accompanies it. Palliative care is also sometimes referred to as comfort care, supportive care, or symptom management.

“Patients and families need to be aware that there are palliative care options outside of hospice that are available at the time of diagnosis of a serious illness like brain cancer,” she says. Patients, she advises, should ask for a palliative care consult and determine if a palliative care team exists at their hospital. Palliative care can also serve as a bridge to hospice at some point in the future. “In asking for this early on, patients and families would be a far better position to transition to hospice care when needed and wanted.”

THE JOURNEY with a brain tumor is an emotional roller coaster for patient and caregiving family alike. Anyone who has been a part of this experience understands the difficulty of these ups and downs. But no matter how long or hard the journey…no matter what the grade or type of tumor…when the road narrows and it is time to think about end-stage comfort, no one feels truly ready for the letting go.
This site is not intended to take hope away from those who are new to the diagnosis or who are still fighting to defy overwhelming statistical odds. I wish them distance—and victory!
Rather, I’ve created this site so that caregivers approaching this important new junction may recognize and understand end-stage events that are likely to happen, as well as find support in providing the best of loving care during this critical time. I share not only my own experiences with my father, but also those of literally hundreds of others who’ve been there as well.
I’m not a medical professional. I have nothing to sell. I came to this through my father’s own journey with gbm (1999-2000) and the learning that continues as others so generously share with me.
Throughout Dad’s battle, I educated myself on radiation and chemo, side effects, and symptoms, feeling fairly well prepared at each turn. But when it was time for the referral to hospice care, I was at a loss. There was no information, or it related only to general cancer death at best. Hospice was a marvelous support to us, but their knowledge about brain tumor death was no better than ours. They didn’t see it coming, and so, neither did we. Since then, in working with other brain tumor families, many things have come to light which now enable families to better prepare and to make the most of the time that remains. That is my wish for you.
The information and advice provided here will, I hope, help you identify your own questions that can be shared with your loved one’s medical team. I hope that the site will assist you in this, the most important “work” of your life. When all is said and done, I wish you peace, a heart that soars, and absolutely…positively…no regrets.
~Diane Phillips

Dying well – Improving end-of-life care for brain tumour patients

Before DD’s dementia really took hold, he used to instruct me to tell her to tell the team he wasn’t dead yet, which caused much amusement! The multi-disciplinary team meeting was held straight after our call and the plan was adapted and the whole team updated if new medical issues had come up. That’s how it all worked.

Things only really changed in the last two to three weeks. He really had absolutely no short-term memory and did not know at this point who anyone was or what he was doing. Crucially, what kept him calm was that his body knew it was at home and was on autopilot in a way until the last seizure.

He would wander at night and I could not cope any more so the team called Marie Curie and we then had the same couple of nurses alternating most nights.

It is true that Marie Curie do not usually nurse children but they said that, as he was 16 and – crucially – there was a clear plan in place, they could help.

I did need to take half a lorazepam every night during those entire last three months to actually get off to sleep – crucially, that dosage is not enough to stop you waking if needed – and I acknowledge that this probably saved my life and enabled me to do a good job.

You cannot do 24/7 care for a dementia patient with spinal tumours for weeks without sleep but someone needs to tell you that and I know I was beyond making a decision like that on my own behalf.

The last seizure made it clear that it was no longer safe for him to be up and about because his legs didn’t work. That was the only occasion in those months when he did get distressed.

I knew I was out of my depth. I made the call. The district nurse and my GP came straight over and we switched to injectable medication because he could no longer swallow.

That is always the hardest part: the unknown when you change from one state of care to another. You have to work out what’s happening and then decide what action to take. Once he was sedated, it was such a relief he was calm again.

The final worry was that my husband and I would somehow not be in the room with him when he died. I was terrified to leave him for a second during those four endless days.

Again, this is where experienced nurses reassure. When our Marie Curie nurse arrived at night, we would brief her, she would assess him.

She would tell my husband and I to go to bed to rest and that she would wake us if anything happened.

In the end, the morning DD died, my husband and I and his brother were there with the Marie Curie nurse with extra back-up from my mum and my sister. Holly had gone on a birthday sleepover that night.

I know DD was completely happy as the last lucid thing he had said, four days before, was ‘I love it here’. So we knew we’d done absolutely the best job for him.

So what I really want people to know is that you must not fear. Grieve, yes – the grief of letting your child go, of understanding and accepting – but do not fear death itself. You are not alone.

The American theatrical manager, Charles Frohman’s last words before drowning in the Lusitania in May 1915 were: “Why fear death? It is the most beautiful adventure in life.”

I believe DD understood that.

Thank you for listening.

Copyright Sacha Langton-Gilks/The Brain Tumour Charity

Sacha Langton-Gilks is lead champion for The Brain Tumour Charity’s HeadSmart campaign for the earlier diagnosis of children’s brain tumours

Atul Gawande Being Mortal: Medicine and What Matters in the End, 2014.

Signs of Dying from Cancer

Cancer is one of the leading causes of death in the United States. Although mortality rates are dropping, cancer is common enough that most people in the United States know someone who has had cancer in their lifetime.

However, not as much is known about cancer end-of-life signs, and what one should expect at the end. Furthermore, many are unaware of the ways in which hospice can help patients in dealing with the stages of death from cancer.

What are the stages of death from cancer?

While the stages of death are different for every cancer patient, and not everyone will experience the symptoms below, here is a general list of the stages and symptoms of death from cancer.

During the Final Weeks:

  • A Lost of Interest in Most Things/Inability to Concentrate: The patient may start to lose interest in things such as the news, entertainment, sports, etc., and may also be unable to concentrate or hold a conversation. Activities that used to interest the patient may now be of no interest. While this can be distressing to the family caregiver, it is not out of the ordinary in the final weeks of cancer.
  • Exhaustion, Weakness, and Desire to Sleep: The cancer patient may become much weaker and more easily exhausted during these last weeks. They may want to sleep often because of this, as well as spend most of their day in bed.
  • Loss of Appetite: They may lose much of their appetite or have difficulty eating and drinking.

During the Final Days:

  • Skin Cools or Changes Color: The patient’s skin may start to feel cold to the touch and may start to turn colors. The process of the skin changing color is known as “mottling.”
  • “Rattling Sounds”: You’ve likely heard of the phrase “Death Rattle.” This is something that occurs at the end of life and is caused by fluids in the person’s throat. This can affect his or her breathing. Breathing patterns may slow as well.
  • Incontinence: An inability to control one’s bladder and bowels at the end of life is another common symptom and sign that the end is near.
  • Confusion: The patient may be confused and delirious, including confusion regarding loved ones and close friends. If the patient is unable to recognize you, please understand that this is a symptom of the disease and nothing more.
  • Restlessness: Cancer patients frequently suffer from restlessness, but this is not necessarily a reaction to pain. However, it is best to speak with the healthcare professionals regarding this restlessness to determine if pain is the cause.

Tips for managing cancer end-of-life signs.

Even if not medically-trained, a family caregiver can provide comfort and care to their loved one as they begin to exhibit the signs of dying from cancer. For example, family caregivers can help cancer patients who are confused or delirious by answering their questions, listening to their concerns, and just by being present. If the patient shows no interest in doing anything, just sit with him or her. If the patient gets confused or angry, fight the natural instinct to become upset. The best thing you can do for your loved one is make this time easier in any way possible.

We also recommend speaking to the healthcare professionals, such as the patient’s primary care physician, regarding other ways in which you can help. Palliative care, for example, is designed to treat the symptoms and side-effects of cancer, which can help with many of these issues. There is no reason that your loved one should suffer more than he or she has to, even before it may become time to consider hospice care. Palliative care can be administered separate from hospice care.

What else you can do for your loved one.

Besides providing relief from the common cancer end-of-life symptoms, a family caregiver can provide both emotional and practical support at the end of life. This usually involves speaking to the patient about their financial plan, but should also include things like speaking to the patient about how they would like to spend their final days. Perhaps there is something they wish they could have done or seen. And perhaps there is some way you can help them make this dream a reality. You can also help them with planning a funeral, as well as speak to them about when they feel it is time to begin hospice care.

Learn about hospice eligibility & cancer.

If you have questions about the signs of dying from cancer, or about hospice eligibility for cancer patients, you can contact us 24 hours a day, 7 days a week by choosing a selection from the blue Help Center bar above.

End-of-Life signs by disease.

Learn about the specific end-of-life signs of common diseases and illnesses:

  • COPD
  • Dementia
  • Congestive Heart Failure
  • Lung Cancer
  • Kidney Failure
  • Diabetes
  • Pancreatic Cancer

More end-of-life resources.

  • Preparing for the Death of a Parent
  • Blood Pressure Before Death
  • Breathing Patterns Before Death
  • What is Active Dying?
  • Mottled Skin Before Death

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