"I’m sorry this is just not the behavior of an experienced politician. It’s also not the behavior of a person whose brain is working normally." When dementia is involved, sexuality can be very complicated.
Excellent article by local RN and author J. Redwing Keyssar What Do We Want? Humane, holistic affordable health care especially at the end of our lives
When Do We Want It? Now!
Most "Baby Boomers" -- numbering in the millions -- are going to die during the next 25-40 years. It's not something we like to think about, but it's true. To the extent that we do think about it, we hope to have what numerous writers in recent years have referred to as "the good death" -- a death of compassion, grace, peace and understanding. Unfortunately, neither our health care system nor our culture is prepared to make that happen. If things are going to change in time to be of some benefit to us as well as those who come after us, we need to launch a political and social movement that supports peoples' rights to appropriate health care.
American society has certainly recorded advances in its approach to death and dying over the last half century, particularly in the last 15-20 years.
It is not a coincidence that the hospice movement happened simultaneously with a powerful civil rights movement as well as a transformative women's movement. As Dr. Eric Cassell reminds us in the film, Pioneers of Hospice, "In the 1960s the private life became public. The personal became public and suffering became public." The personal, as we understood from the women's movement, also became political -- and the subject of public policy.
- 1974: First federal hospice legislation was introduced to provide federal funds for hospice programs
- 1982: Congress included a provision to create a Medicare hospice benefit in the Tax Equity and Fiscal Responsibility Act of 1982. This benefit assures that those with a terminal illness (as substantiated by a physician to have a prognosis of six months or less) would receive a medical program of care and support provided by a specially-trained team of health care professionals. The hospice program focuses on comfort rather than cure.
Thanks to this legislation and the broader hospice movement, pain and suffering and how we care for our elders and our sick finally became a public discussion and the mandate to relieve that suffering became the work of our health care professionals. However, most people still die in hospitals and nursing homes, without hospice care, often receiving costly but ultimately futile medical care.
To truly change health care at the end of life we need to go beyond hospice institutions to more fully develop and embrace the medical approach known as palliative care.
Palliative care is NOT the same as hospice care, although many people, including health care professionals, are confused about what it does mean. Palliative care is about addressing symptoms of distress on every level -- physical, emotional, spiritual, psychological, throughout the course of an illness, not just in the last six months of life, which is the realm of hospice care in America. Palliative care offers extra layers of support to people who are already dealing with serious medical issues but need more than our fragmented system can offer them. Palliative care includes communication about what it feels like to have a disease; understanding the impact of social and financial issues on the course of illness; spending enough time with people to appreciate the spiritual aspects of their lives -- whether that is a religious affiliation or a love of music or nature or something completely personal.
The recent findings of the report on "Dying in America" from the Institute of Medicine are encouraging in stating: "A substantial body of evidence shows that broad improvements to end-of-life care are within reach." In the key findings, it states, "Palliative care is associated with a higher quality of life, including better understanding and communication, access to home care, emotional and spiritual support, well-being and dignity, care at the time of death, and lighter symptom burden." All of us will need and want holistic, compassionate care when we are facing serious illness, but this type of care will not be widely available unless we understand it, and demand it, NOW. We will only get palliative care if we, the public, the "consumers," demand that insurance companies and ACOs and Medicare adequately cover palliative care, homecare, and hospice care. Currently, hospice care is the only type of homecare covered by Medicare, and palliative care is predominantly only covered in hospital settings.
We know that palliative care saves money, improves lives, and improves outcomes. The well-known "Temel study," for example, showed significantly improved quality of life as well as survival, and the new Institute of Medicine report is a big step in showing the benefits of palliative care for patients, families and for the bottom line economically.
None of us will "get out of here alive" -- not politicians, not CEOs of insurance companies, no one. So why not work as hard as we possibly can to transform the culture of dying in America from one of fear and pain and anxiety and excessive spending of health care dollars, to one of acceptance and understanding? Palliative care is the means to achieve this end, but we're not going to get it unless -- while we're still healthy -- we demand legislation and policies that reflect the needs of an aging population and honor that great mystery that we call Life.
What Can We Do?
- Revive local end-of-life coalitions
- Support public policies that further the conversations about pain and suffering, living and dying, palliative care and hospice. o http://thehill.com/policy/healthcare/213102-advocates-call-on-lawmakers-to-expand-palliative-care#ixzz38ibjcjlI o http://www.iom.edu/endoflife
- Meet with our own families and friends co-workers to have conversations about Advance Directives for Healthcare and our wishes for end of life care
- Create communities, as they have done in LaCrosse, Wisconsin, that encourage citizens and health care systems alike, to support honest conversations around end-of-life care. o http://www.gundersenhealth.org/respecting-choices o http://theconversationproject.org
- Normalize not only the conversation about death, but also the reality that it is simply a part of life, for each and every one of us.
- Attend your local "death café" meeting -- a new and creative way to have conversations about death and dying o http://www.deathcafe.com
- Demand an end to the cuts in hospice budgets that are decreasing services at a time of increasing need
- Demand that our social service systems adopt programs to support family caregivers of dying loved ones, who suffer mightily and need much more support than is recognized or provided.
- Show up at the bedsides of those you care about who are dying, and offer your presence and support
Finally, we must re-design a health care system where holistic, palliative care of those with serious illness and those who are dying becomes the standard best practice of care, not the exception.
J. Redwing Keyssar RN, Author, "Midwife to the Dying"; Director Palliative Care, Jewish Family/Children's Services, San Francisco www.lastactsofkindness.com
As I do geriatric house calls around the San Francisco Bay Area, I am asked this question all the time. Like many areas in geriatrics, the expected life span of a patient is often quite difficult to pinpoint. This is a huge reason why there’s a growing trend for patients to be bounced from hospice care.
I’ve been a hospice medical director, and I’ve worked through the formulas, the algorithms, for admitting a patient to hospice, or not doing so. As medical professionals, we do our best. But I’ve seen it again and again:
• An elder may be seem to be at death’s door. Then, inexplicably, that elder will rally and hang on to life for months more.
• Or, conversely, a patient may be declining, and then suddenly take a turn for the worse and die.
It’s so difficult to assign probabilities to individual cases. For instance, a patient with advanced dementia has a 25 percent higher risk of dying from pneumonia than another elderly patient. But what if the patient in front of me never gets pneumonia?
I understand that hospice facilities need to be reserved for the patients that most need them. That’s why each hospice case needs to be recertified every 60 to 90 days. Sometimes, a patient may be clearly be on a long downslide toward death, and yet not be expected to die within the next six months (the standard required for admission to hospice).
I think the most important thing to remember—whether the timeline is 9 months or 9 days—is that we make sure we are protecting elderly patients from procedures or treatments that will be painful and distressing, but have little chance of prolonging life.
In my practice, this means:
• I do everything I can to keep my declining patients out of the emergency room and the hospital. Patients in what probably will be their last year of life seldom win any extra days by running off to the hospital. Many, many procedures can now be done at home: blood tests, x-rays even dental care. Staying in place is more reassuring for elders, especially those that suffer from dementia.
• I always weigh whether the distress of a procedure is outweighed by the benefit. For instance, if a declining elder falls and may have a fracture, I would generally recommend that an x-ray be done. When a patient is dying, our primary goal should be the patient’s comfort. No one should have to endure the pain of a broken bone, even someone who’s dying.
So these are the questions to ask:
- Will the procedure really prolong life?
- Could the procedure be done without moving the patient from their residence?
- Will the procedure maximize comfort and peace of mind?
Of course, other physicians may have different ways to judge whether hospice, or a particular procedure, is warranted. What do you think? Are there other things we physicians should take into account?
UPDATE 5/7/2018: The American Bar Association no longer supports this smartphone app. The other advice in this blog post is still relevant, and includes alternatives to this app.
If you’re one of my patients, or the family of one of my patients, I’ve already nagged you about this.
Make out an advance healthcare directive: figure out who you would want to make health and legal decisions on your behalf if you become unable to do so for yourself. Think about what you want to have done if you are critically ill: Would you want everything done to prolong your life? Or are there certain procedures you’d like to avoid, such as a tube to help you breathe with a respirator?
As a culture, we are not very good at talking about endings. So only a small percentage of people actually prepare these forms, but they’re essential if you want to avoid treatments that are more aggressive than you would want, or if you want to keep some unscrupulous relative from taking over your affairs and your medical decision-making power. Please, please, please, make your wishes known to your loved ones and care providers before it’s too late.
But here’s the other thing you need to know: If you go to all the trouble to prepare advance directives, they won’t be followed if loved ones don’t know where they are, or if they’re locked in a safe deposit box or some other secret spot. If the EMTs show up at your doorstep, and you’re unconscious or unable to communicate, they can’t follow a “Do Not Resuscitate” (DNR) order if they don’t actually see a signed, witnessed copy of that document.
So what to do? Luckily, we live in the digital age. The American Bar Association has developed a free, smartphone app called “My Health Care Wishes.” The app will store all your advance directives on your phone. And most of us have a phone around pretty much all that time, so mischief managed. If your elder doesn’t have a smartphone, the documents can be stored on a family member or caregiver’s phone. The app works on both Apple and Android phones.
You can also store healthcare directives digitally in other ways: For $45 a year, Docubank will make your directives available with a phone call. MyDirectives makes available a Universal Advance Digital Directive (uADD)™ for free, from a web-based database. It makes money by charging healthcare providers to access the database.
At the very least, you should post on the refrigerator emergency contact information, current medications and illnesses to help the EMT's if they are called in an emergency. Emergency personnel are trained to look at the refrigerator for such information in homes.
Be sure to have a conversation with your family, friends and especially your 'agent' -the person who will be making decisions for you. Be sure they know not only what your wishes are, but where you keep your important papers, as well as have access to your computer and phone passwords.
So the directive templates are out there. There are ways to make them easily available when a problem comes up. You don’t have any more excuses to avoid completing a directive.
Just do it. Please. You and your family will not be sorry.
Elizabeth Landsverk, MD, Specialist in Geriatrics