Posts

What a doctor wishes patients knew about the end

As a hospice and palliative medicine physician, my job is to help reduce suffering. At the end of life, that job becomes especially intense when time is short, when machines and data seem to be taking over, and so many intense emotions surround a body that is trying to die.

BJ Miller

BJ Miller

But here in that narrow trench, both providers and patients do have power to shape their experience together, especially if they take the time to have a few crucial conversations. In the spirit of palliation, here are a few things, as a physician, I wish I could share more often with patients and their caregivers.

You don’t need to be dying to receive palliative care

In hospitals, it is still common for palliative care clinicians to be pulled aside by a well-meaning though misinformed nurse or doctor who says, “This poor family is miserable, but they’re not ready for palliative care yet.” They imply that either the patient is not dying, or the patient does not realize that he or she is dying. But what this statement does is to conflate hospice or end-of-life care with palliative care. Palliative care is an approach, framed within the context of serious illness, where easing suffering is the goal. So, you just need to be sick and suffering to qualify for palliative care, not necessarily dying any time soon. Don’t be afraid to say you want it.

Don’t wait for your doctor to bring up hospice

What a doctor wishes patients knew about the end

Doctors tend to wait too long to acknowledge when death is close. And as research has made clear, the closer we feel to the patient, the more wildly we overestimate their prognosis.
The median length of stay in hospice care in the United States is 24 days.
As a rule, this is too short. So here’s an inside tip for patients and loved ones starting to wonder about hospice. In an effort to get primary physicians to think sooner about recommending hospice, researchers came up with the “surprise question.” As in: “Doctor, would you be surprised if your patient died within a year?” If the answer is no, then that doctor should start considering a referral to hospice. But there is nothing stopping you from asking the surprise question yourself. If you live with advancing chronic illness and are thinking about how you want your life to go, you might turn the table and ask: “Hey doc, would you be surprised if I died in the next year?” This is a good and bold way to open an honest dialogue with your doctor and get the sort of support you need.
The healthcare system is wired to extend physical life, without much regard to the psychological, spiritual, or financial costs. With advances in technology, we are able to prop up a body practically indefinitely. And it’s well known that doctors tend to presume you want aggressive care, even when care geared toward your comfort may be more in line with your wishes. Unless you say otherwise, the doctor’s presumption rules the day. This means that at some point you may need to say “no” to that next treatment. So be sure to look up now and again and check that the care you’re getting is the care that suits you.

It’s OK to laugh

Deaths from dementia have more than doubled in US, report says
In my book, “A Beginner’s Guide to the End: Practical Advice for Living Life and Facing Death,” someone tells of their stepfather wearing a shirt that read, “I’m so old I can’t find my own nuts,” with a doodle of a squirrel on it. His dying wish was to make his daughter laugh, and it helped both of them immensely. To honor him, she buried him in that shirt, sealing his personality in death as it had been in life. Illness isolates people, not just physically. When we get sick, people around us start censoring themselves. The solemnity is supposed to be a form of kindness, perhaps, but it can feel more like yet another loss, almost a premature death. As patients and caregivers know, illness and its indignities offer plenty of rich material for humor. The joke is only on us if we don’t find some way to laugh back.

Those guardrails on the hospital bed go down

Dr. Marianne Matzo is a PhD nurse who researches sexuality at the end of life. She told me a story about a patient who died in his hospital bed while he and his wife were in the middle of oral sex. Dr. Matzo tells this story as a triumph rather than a tragedy: The couple had found a way to maintain intimacy until his last breath. We are still living when we are dying. When those guardrails go down, it is possible to cuddle or caress one another. Those moments are about feeling connected, sexually or otherwise, and finding ways to be in that body while you have it. They are about reminding yourself and each other that you are still here, both of you, able to love and be loved. This is how healing works, and it is very much possible to be healed — to be whole — even as your body falls apart.

To the caregivers: Don’t be afraid to leave the room

In their final days and hours, dying people are usually in and out of consciousness; even when awake, they are often delirious. That means your loved one might say or do things that are completely out of character. Behavior ranges from sweet to insufferable. I met an elderly woman at a conference once who nervously relayed the story of her husband hurling strange and vulgar accusations before losing consciousness for good. Now there was trauma on top of sorrow. I wish someone had told her earlier about the very normal condition of deathbed delirium.
I also wish that caregivers knew it was OK to leave their loved one’s bedside. How many times will they have spent hours gathered in the room, not eating or sleeping for days, barely blinking, not wanting to miss that last breath, only to have the person die just when they nod off or use the bathroom?
As any hospice worker can tell you, this is also a well-known phenomenon. It’s almost as if the presence of others — especially deeply loved ones — gets in the way of the dying person’s final step. That big moment may need to happen alone. What dying people seem to need at the very end is to know that the people they love are going to be OK; that life will go on and that you — the person they care for — will be able to take care of yourself. So, the kindest thing you can do is to demonstrate that care by leaving the room when you need to. Just be sure to give a kiss and know that it may have to be the last.
Source: CNN BJ Miller, M.D.
BJ Miller, M.D. is a hospice & palliative medicine physician who sees patients and families at the UCSF Helen Diller Family Comprehensive Cancer Center. Miller’s career has been dedicated to moving healthcare towards a human centered approach and he advocates for this on a policy as well as personal level. He is the co- author of “A Beginner’s Guide to the End: Practical Advice for Living Life and Facing Death.”
The opinions expressed in this commentary are his own.

How to Console a Senior Who Is Afraid of Dying

“I’m dying.” These are words that most of us dread hearing from the people we love. However, death is an inescapable part of life. If it hasn’t happened already, chances are you’ll be called upon to help a parent, spouse, friend or other loved one through the valley at some point. Yes, it can be a terrifying prospect, but it is also an honor. This is a valuable opportunity to help your loved one make the most of their remaining time on earth, to assist them in taking the next step without regret, and to create priceless memories for you to cherish once they’re gone.

There are some hurdles throughout this process, though. The end of life often stirs up many powerful emotions, among the most poignant being anxiety. Because death is different for everyone and we know so little about what happens after a person passes, patients and family alike are often overwhelmed by fear of the unknown. Below are the seven most common fears associated with dying and how caregivers can help console their loved ones at the end of life.

Fear of the Dying Process

Apprehension about the actual dying process typically stems from a fear of pain and discomfort. People at the end of life may wonder, “How will I get through this?”

Make sure your loved one knows that they will experience little or no pain unless they choose to. Hospice care providers specialize in providing pain and symptom management for terminal patients. Staff members are trained to interpret what patients need by reading verbal and nonverbal cues, and they will discuss the benefits and drawbacks of each option with patients and their families.

Fear of Losing Control

Some individuals who are dying are able to continue leading a relatively active and normal life until the very end. But those who are very ill typically must rely on family members and caregivers to help them with activities of daily living (ADLs) in their remaining months, weeks or days. Many patients are uncomfortable with the thought of depending on others for supervision and assistance, and this is normal.

To help dispel this fear, encourage your loved one to stick to their usual routine for as long as possible. A life-threatening or terminal diagnosis does not change who the person fundamentally is. When it becomes clear that they will need to accept care from others, arrange for them to meet with and get to know their caregivers in advance, especially if medical professionals are involved. Becoming familiar with nurses and aides before their full services are required can alleviate discomfort and fear.

Furthermore, if you haven’t already discussed end-of-life wishes with your loved one, time is of the essence. Most people execute a living will, do-not-resuscitate order (DNR), physician orders for life-sustaining treatment (POLST) form, or other legal document to spell out the type of care they DO and DO NOT wish to receive. Discussing these matters and putting them into writing while your loved one is still competent to make decisions will help them feel more confident that their wishes will be respected even if they are unable to convey them.

Fear of Leaving Loved Ones Behind

Some people at the end of life wonder less about their own predicament and more about how their loved ones are coping and how they will handle the loss. They may wonder, “What is going to happen to my family? How will they manage after I’m gone?”

Only those closest to the dying person can alleviate this fear. Be willing to frankly discuss with your loved one what will happen to everyone once they die, and do everything you can to reassure them that you will all be okay. If children or dependent adults are involved, help to formulate a detailed plan for their future care.

Fear of Others’ Reactions

The focus during a loved one’s end-of-life experience is to keep them as comfortable and relaxed as possible. This is not an easy process to go through or to witness, and emotions usually run high. It’s natural to feel fear and sadness, but after the initial shock has worn off, try to behave normally. Relish this time together instead of dwelling on the inevitable loss. It is okay to express your true emotions but remember that this experience is not about you. Be respectful of your loved one’s need for peace and support.

Make sure that all caregivers and family members (yourself included!) are getting enough sleep, healthy meals and emotional support. The effects of going without these necessities is evident in both appearance and demeanor and may cause your loved one additional worry. Lastly, ensure that all caregivers and visitors are told in advance what to expect. This will help to avoid reactions of shock or fear that can be unsettling for the dying person.

Fear of Isolation

Fear of any kind typically causes us to long for the company and reassurance of those we love most. The possibility of facing the end of life alone would cause anyone considerable anxiety, and this is a common concern for many seniors. They wonder if their friends and family will come to visit them and if they will continue being attentive and supportive until the very end.

Quite simply, make sure that regular visits with close friends, family members and volunteers are scheduled. Ensure the senior feels loved and important, but avoid exhausting them with nonstop visitors. If you don’t live near your loved one or cannot commit to frequent visits for other reasons, consider taking advantage of hospice care providers, volunteer organizations or church ministries. End-of-life care from these groups may include regular visits from nurses, aides, clergy, musicians or volunteers that can dramatically increase a patient’s quality of life.

Fear of the Unknown

Will there be life after death? What can I expect? Everyone has dwelt upon these questions at one time or another. Even the greatest self-professed skeptic wonders what will happen after they take their last breaths. Addressing this concern has physical, emotional and spiritual implications. Even if your loved one is not religious, consider asking a priest, rabbi, minister, pastor, etc. to come speak with them. Outside resources such as these can offer a gift of peace, regardless of past doubts and skepticism.

Fear That Life Has Been Meaningless

People who are leaving this world need to hear that they are valued, that their accomplishments had a positive impact on the world and that they won’t be forgotten. Don’t miss the chance to tell your loved one how much they mean to you and remind them of all the good they brought to your life. Reassure them that their life had purpose and meaning, and encourage others to do the same, either in person or through cards and letters. Also, take time to go through photo albums, share memories and absorb life lessons from your loved one.

Source: AgingCare – Donna Authers

Geriatrician Looks at Sensitive Issue of Senior Gun Ownership

In the United States the debate around gun ownership often focuses on teenagers; however, research shows that elderly Americans are the most likely to own a gun and that presents both medical and legal problems for physicians and carers.

Writing in an issue of the Journal of the American Geriatrics Society, Dr. Ellen Pinholt explored these issues and proposed a series of “red flag” questions which caregivers must ask.

While there is no upper age limit on owning a firearm, Americans aged over 65 have the highest prevalence of dementia, depression and suicide. Federal law prohibits mentally incompetent persons from possessing a gun; however, this only applies to a formal finding by a court and not necessarily to a physician’s diagnosis of dementia.

Using a series of case studies to explore the medical and legal dimensions of the issue, Dr. Pinholt suggested “5 Ls,” questions about gun ownership which should be asked as routinely as questions about driving.

  1. If there is a gun present, is it LOCKED?
  2. Is it LOADED?
  3. Are LITTLE children present?
  4. Does the gun owner feel LOW?
  5. Is the gun owner LEARNED about how to safely use the gun?

Source: Wiley Online Library News Release; Journal of the American Geriatrics Society, 4 June 2014

Learn More

The U.S. Department of Veterans Affairs offers a free online brochure, “Firearms and Dementia.”

Choosing a Quality Hospice

When a loved one is diagnosed with a serious or life-limiting illness, the questions facing an individual or a family can be overwhelming. The National Hospice and Palliative Care Organization (NHPCO) recommends that people learn more about hospice as an important option before they are faced with a medical crisis.
Hospice is not a place but a kind of care for people who have a life-limiting illness and are making the choice to focus on quality and comfort if more conventional treatments have become burdensome.
Hospices provide high-quality care specially tailored to your needs and valuable support to family caregivers.
With multiple hospices serving some communities, it can seem challenging to select one. NHPCO suggests the best way to begin is by reaching out to the hospice providers in your community to find the one best equipped to meet your specific needs.
“Choosing a hospice to care for yourself or a loved one in the final months or even days of life is an important and stressful process,” said J. Donald Schumacher NHPCO president and CEO. “Each hospice offers unique services and partners with specific community providers – so it’s important to contact the hospices in your area and ask them questions to find the one with the services and support that are right for you.”
Your physician, other healthcare providers or family friends that have taken advantage of hospice services in the past are other good ways to get a recommendation for a provider in your area.
Some of the questions important in choosing a quality hospice include:
1. Is the hospice Medicare certified?
2. When was the last state or federal survey of the program?
3. Is the hospice accredited by a national organization?
4. What services should I expect from the hospice?
5. How are services provided after hours?
6. How and where does the hospice provide short-term inpatient care?
7. What services do volunteers offer?
8. How long does it typically take the hospice to enroll someone once the request for services is made?
Another question is when to begin hospice care. Every patient and family must decide that based upon their unique needs. However, professionals encourage people to learn about care options long before they think they may need them.
To help families make a decision at a difficult time, the NHPCO has created a free worksheet to help consider and answer some of the important questions to consider when learning about or choosing a hospice. Down load the worksheet (www.momentsoflife.org/sites/default/files/public/moments/Choosing%20a%20Hospice.pdf) from NHPCO’s Moments of Life website.
Source: The National Hospice and Palliative Care Organization (www.nhpco.org).

The 100+ Population is Expected to Soar

Will you live to be 100 years old? A study from Kings College London predicts a steady increase in the number of us who will achieve that advanced age. In 2011, there were approximately 300,000 centenarians worldwide. The Kings College researcher project that there will be three million people 100 or older by the year 2050—and by the end of this century, there could be 17 million!

Where will these oldest seniors spend their final years, and what services will they need? Dr. Catherine Evans, Clinical Lecturer in Palliative Care at the Cicely Saunders Institute, King’s College London said: “Centenarians have outlived death from chronic illness, but they are a group living with increasing frailty and vulnerability to pneumonia and other poor health outcomes. We need to plan for health care services that meet the ‘hidden needs’ of this group, who may decline rapidly if they succumb to an infection or pneumonia. We need to boost high quality care home capacity and responsive primary and community health services to enable people to remain in a comfortable, familiar environment in their last months of life.”

The researchers call for appropriate care at the end of life for these frail elders, to reduce hospital admissions and to support quality of life.

Source: AgeWise reporting on study from Kings College London; you can read more about the study here: http://www.plosmedicine.org/article/info%3Adoi%2F10.1371%2Fjournal.pmed.1001653

Ten Things You May Not Know About Hospice

November is National Hospice/Palliative Care Month. Here is some information about hospice care from the National Hospice and Palliative Care Organization.

Most Americans have heard about hospice care. They know that hospices care for people at the end of life. Most people know a family or friend who was helped by hospice when faced with the serious illness and death of a loved one. But there’s so much more to know.

For example, did you know that hospice provides what the majority of Americans say they want at the end of life? Excellent pain management, comfort, and support for the patient and family caregivers.

Ten more things you should know about hospice:

  1. Hospice is not a place but a special kind of care.
  2. A hospice care team is made up of doctors, nurses, social workers, counselors, spiritual care providers, trained volunteers and other skilled professionals who provide high-quality, compassionate care.
  3. Hospice care is available to people of all ages with any kind of life-limiting illness, including cancer, advanced Alzheimer’s disease, heart disease, lung disease, kidney disease, HIV/AIDS and other life-limiting illnesses.
  4. Hospice care is fully covered by Medicare, Medicaid, and most private insurance plans and HMOs.
  5. Hospice provides all medications and medical equipment needed to keep a person safe and comfortable.
  6. There’s no limit to the amount of hospice care a person can receive; it’s available as long as a doctor believes a patient is eligible.
  7. Most care is provided at home but hospice is also available in nursing homes, assisted living and long term care facilities and hospice inpatient units.
  8. Hospice care can include complementary therapies, such as music and art, to bring additional comfort to patients and families.
  9. Hospice programs offer grief support to the families they care for as well as to others in the community who are grieving.
  10. More than 1.5 million people receive care every year.

One of the most common sentiments shared by families who have been helped by hospice care is, “We wish we had known about hospice sooner.”

To find out if hospice might be right for you or your family, or to learn more, visit Caring Connections at www.caringinfo.org or call the HelpLine at 1-800-658-8898.

Source: National Hospice and Palliative Care Organization (www.nhpco.org)