In this time of Santa, we hear the saying naughty and nice. Here are four naughties that can be turned into nice, enhanced experiences common to end of life.Keeping Secrets: Dont tell mom. Dont say that she could die. Dont talk to her about sad things. Pretend everything is going to be alright. Mom lives inside of her body. She knows if it is preparing to die. She may play your game of pretending but she knows. She is frightened, you are frightened, but now you are both frightened alone. By talking, by sharing, you are able to support each other, love each other during this stressful, sad time.Delaying beginning hospice services: We associate hospice care with dying care, when in fact hospice care is living care. Hospice helps people live the best they can while they cant be fixed, while their body is shutting down. If you wait until a person looks like they are dying they probably have one to three weeks to live. If you wait you will have missed out on all the guidance, the help that hospice could have provided in those months before death. Help with caregiving, help financially, help with knowledge and help with emotional support. You will miss out on guidance during one of the most challenging times in a persons lifethe time a loved one is dying.Thinking you can care-giver alone. It takes a village as the saying goes. Caregivers become exhausted, frightened, and are not prepared for the physical, let alone the emotional toll, of caregiving. Being the little red hen, saying I can do it myself, leads to burnout, anger, and frustration during a time when we want to be loving and supportive. It takes a village!Not talking about the person who has died: In our grieving we sometimes think, particularly during the holidays, that we just make people uncomfortable when we talk about someone who has recently died. When a recent death has occurred everyone close to that person is, in their grief, thinking about the huge space that is not filled. Talk about it. Dad would have loved , address the elephant in the room, set a place at the table and put a picture instead of a plate. Be creative in ways to include our missing special person.
In this weeks TIME cover story, The Long Goodbye (available to subscribers here), journalist Joe Klein writes about the loss of his parents. They both suffered from dementia and died within months of each other. Through their end of life, Klein became his parents death panel. For the many other families facing the same journey, experts best advice is to prepare early. As with most difficult transitions, caring for a parent or loved at the end of life is easier if youve planned for it. Trying to make the best possible decisions about care often leads to added stress and confusion, especially if your family is already in a difficult situation. Its all pre-planning really, says Malene Smith Davis, CEO of Capital Caring, which provides palliative care and guidance for families. People really do cope well if they have a conversation about care with their families early. When families dont have the conversation, thats when theres turmoil because no one is prepared and its inevitable. Here are some tips for making end-of-life care easier to handle: Keep communication open. Have the conversation early. Make sure family members designate who they want as their health care agent if they cannot make medical decisions on their own and need someone to speak on their behalf. The last place you want to have a conversation about who will take over as a health care agent is in an emergency, says Paul Malley, president of Aging With Dignity, a Florida-based advocacy group for terminally ill patients. This can be the adult child or the parents best friend perhaps. There needs to be a conversation about everything from what medical treatments the loved one wants to how they feel about life support. The fewer surprises the better. Malley recommends opening the conversation to the entire family. So often when parents are older or have a serious diagnosis, we put them in the hot seat and say, O.K., Mom and Dad, here are a list of questions you need to answer. Instead, bring the whole family together. Even college kids can tell their families what they want in an emergency. That way the whole family can think back and remember everyones wishes, he says. Involve your doctor. I think its really important that when these medical decisions are made, the family and the doctor are present, says Carol Levine, director of the Families and Healthcare Project at United Hospital Fund. Not all doctors are comfortable talking about end-of-life kinds of issues. Involving the doctor in conversations about emergency care can alleviate tension when treatment options are discussed. Get it in writing. Its not enough to just have a conversation once and not talk about it again and its also not enough to fill out legal documents and never discuss wishes with family members, says Malley. Both need to be done. Aging with Dignity has created Five Wishes, a living will that is legal in 42 states and has been translated in 26 languages. The document allows families to let care providers know who they want to make health-care decisions, what medical treatments they want or dont want, and what they want loved ones to know. Here are some other documents the National Institute on Aging recommends for everyone: Living will: records a persons wishes for medical treatment near the end of life Durable power of attorney for health care: designates a person, sometimes called an agent or proxy, to make health care decisions when the person can no longer do so Do-not-resuscitate (DNR) order: instructs health care professionals not to perform cardiopulmonary resuscitation if a persons heart stops or if he or she stops breathing. A DNR order is signed by a doctor and put in a persons medical chart Will: indicates how a persons assets and estate will be distributed upon death Durable power of attorney for finances: names someone to make financial decisions when the person no longer can. It can help terminally ill people and their families avoid court actions that may take away control of financial affairs Living trust: provides instructions about the persons estate and appoints someone, often referred to as the trustee, to hold the title to property and funds for the beneficiaries. The trustee follows these instructions after the person can no longer manage his or her affairs Another document to consider is a physician orders for life-sustaining treatment (POLST) form. It details what the patient wants in terms of medical treatment including CPR, feeding tubes and medical interventions if the patient is not breathing or is without a pulse. The form is signed by both the physician and health proxy. Not every state has a POLST program, but here are some samples. Doctors feel compelled to treat, no matter what, most of the time, says Carolyn Rosenblatt, founder of AgingParents.com, a resource for people caring for aging loved ones. They are also afraid of getting sued for hastening death. The form protects them by giving them immunity. One would hope that they could then go about decision making with more common sense. Recognize that you might not be the best person to take over. The person who becomes the health care proxy needs to be comfortable with that, says Levine. Being that person means making very hard decisions at a certain point. It is better to know if you can handle it ahead of time so someone else can take on the role if need be. Experts recommend siblings also talk to one another early about how to divide responsibilities to avoid conflict later. Talk about hospice care early. Hospice care provides medical treatment, emotional support and spiritual resources for people who are in the last stages of a terminal illness. I often see people who get into hospice care and wonder why they didnt hear about it sooner, says Davis. In many cases, that may be because people see hospice as giving up though, actually, people who receive palliative care at the end of life may live longer than those who continue with aggressive, life-saving interventions. Also, hospice can be a difficult topic for doctors to bring up to their patients. Davis recommends talking about hospice care with your family early, in order have care for the longest time possible. Hospice is a Medicare program and many state Medicaid plans and private health insurance plans pay for it as well. Talk about it early because although we all see ourselves dying in old age, its healthier to bring it up just in case. That way, it can be about your own personal wishes as well as the wishes of your loved one, says Davis.
Hospice has long been known for the ability to provide comfort and dignity throughout the dying process. Sadly, too few people are aware that they or their loved ones do not have to be dying from cancer or be in excruciating pain in order to take advantage of this end-of-life care. Hospice care can be just as effective for a much wider range of patients suffering from chronic conditions. This can include those affected by heart failure, chronic obstructive pulmonary disease (COPD), amyotrophic lateral sclerosis (ALS), stroke, renal failure, liver failure and even dementia. Unlike these other serious illnesses, Alzheimers disease (AD) and dementia are extremely difficult to categorize into neat stages of progression that are typically used to determine whether hospice care is appropriate. Life expectancy is difficult, if not impossible, to pinpoint for a patient affected by AD and related conditions like vascular dementia, Lewy Body dementia, and frontotemporal dementia. Furthermore, patients in the later stages are usually unable to communicate things like pain or discomfort. This means that family caregivers and even their loved ones physicians can have a tough time deciding when to call in hospice. Estimating how long a person has to live is nearly impossible. It simply cannot be done with absolute accuracy in most cases. Dementia can complicate this process, but taking a persons personality prior to their diagnosis into consideration can help. I had a patient many years ago who had Lewy Body dementia (LBD). His daughter was his primary caregiver and was experiencing an immense amount of stress over the worsening of his symptoms. He would often lose track of time, and it had become hard to hold his attention. The daughter and I sat together and through tears she told me about her dad while she was growing up. We were able to look at some of his current symptoms and link them back to his earlier self to get a better idea of his disease progression. Doing this seemed to take some of the fear away for her. We still did not know exactly what the future held for her dad, but we were able to look at him as himself and rather than a group of scary symptoms. What criteria are used to admit someone with dementia into hospice care under Medicare guidelines? For a patient to be admitted to a program using a diagnosis of dementia, Medicare requires that we are more specific than typical hospice requirements involving a 6-month life expectancy. Most programs use the following as a standard in assessing if a dementia patient is appropriate for hospice services: The patient has a stage 7 ranking on the Functional Assessment Staging (FAST) scale. The FAST scale consists of 16 items that rank the progression of dementia symptoms. For example, a ranking at stage 7 means a patient suffers from incontinence and is unable to dress, bathe, walk, or use the restroom without help. They are also unable to speak meaningfully or express their own thoughts. Other illnesses presently exist alongside the patients dementia. Also known as comorbidities, these are an important part of hospice eligibility. Dementia comorbidities can include sepsis, severe weight loss, pneumonia, pressure ulcers and fever. A present comorbidity is often an enrollment requirement, and the patient is required to have received treatment for that comorbidity within the last year.Determining eligibility can be a very difficult task for clinicians and physicians, and the current means of measurement and classification absolutely have room for improvement. However, by patients, families, hospice teams, physicians, and Medicare continuing to all work together, we open the doors for many more dementia patients to receive the comfort care they deserve, but may not be able to request. How do you know when to seek hospice for a dementia patient? Very simply put, ask now! I am a big advocate for early hospice/palliative care intervention. I believe that if a family caregiver is thinking their loved one needs help, has questions, and needs guidance, then that is the time to seek out assistance. I encourage families to talk to their doctor, other family members and friends who have used a hospice or palliative care program and to begin their own research using sites such as AgingCare. It is never too early to begin gathering information and forming a plan as a family. Hospice is here to support the patient as well as their family members. It is important to know that there are people out there whose passion is helping families navigate these very trying waters. But, I will get off my soapbox for a moment and give a more detailed answer to your question. Those suffering from dementia decline slowly over time. This can sometimes cause family members to not seek help because their loved one's condition has changed so gradually. While a physician must make the official determination of life expectancy, it is time to request hospice enrollment if an individual with dementia exhibits the following signs: Constant, elevated levels of anxiety and stress; Complete dependence on others for assistance with activities of daily living (ADLs) such as eating, bathing, grooming and toileting; Extreme difficulty or complete inability to walk without assistance; and The ability to only speak a few intelligible words and phrases. Are there providers that specialize in end-of-life dementia care? While all hospices have the ability to provide care for someone with dementia, there are providers that actively specialize in this. These hospices typically have tailored programs that are designed to support everyone involved in the life of a patient affected by this disease and help them cope with the challenges it brings to patients, family and caregivers alike. Regardless of the programs specialty, family caregivers can ask the following questions of a provider to help ensure their loved one will receive the highest level of care: 1. Is your program certified by Medicare? 2. Is your staff experienced in providing care to patients with dementia-related illnesses? 3. Do you offer specialized services to improve a dementia patients comfort? 4. What services do you offer to the families, caregivers and friends of patients with dementia? I also find that you cannot underestimate the importance of well-trained and loving hospice nurses and aides. They are the true backbone and unsung heroes of these end-of-life programs. This is the disciple that will spend the most time with your loved one and help them complete the most intimate tasks like bathing, dressing, toileting, brushing their teeth, etc. Many individuals with dementia have a fear of water, so having patient aides with a keen understanding of this disease is a must. When I was choosing a hospice provider for my own father, I asked the most questions about their aides! We see them three times a week, and if you ask my dad what he likes most about hospice, he will say Bridgette and Carol (his aides). What are the benefits of comfort care over hospitalization at the end of life for common issues like urinary tract infections (UTIs) or pneumonia? To answer this question, you need to refer to your loved one's end-of-life preferences. Hopefully this was a conversation that took place early on while they were still mentally competent and resulted in appropriate planning measures such as a living will, a do not resuscitate (DNR) order, a voluntarily stopped eating and drinking (VSED), POLST form, or advance directive. Hospice is provided wherever the patient is. This can take place in peoples homes, nursing homes, hospice houses, homeless shelters, and anywhere else a person is comfortable and wishes to remain. This is something that providers and employees take very seriously. I have visited patients in all of these settings. Many people want to die at home, and by the time they enter a hospice program, they are completely over hospitals. Then there are people that want to stay at home for most situations, but wish to die in a hospital or hospice house. We respect all of these situations and work to make this happen for each patient and family. The situations that break my heart are when patients are not being cared for by a hospice team and an infection occurs. This is common in those with late stage dementia and infections are often the actual cause of death. This is primarily due to the patients inability to clear bacteria from their body and notify others of their symptoms or pain. Urinary and fecal incontinence, difficulty swallowing and breathing, and an overall reduced immune system all contribute to illness. When these infections persist, and the patient resides at home or in a facility without the benefit of hospice care, they are often moved to an acute care hospital for treatment. In these scenarios, hospitals typically go to great lengths to treat the infection, including treatments and medications that may not be efficient in the long term and result in discomfort, such as feeding tubes. These patients can be hospitalized multiple times for recurring issues, and the stress and discomfort that accompanies constant illness and changes in environment can quickly take a toll on them. Hospice ensures that the family is kept knowledgeable and involved, and all treatment methods are focused on the patients comfort and dignity. Unlike hospitalization, this care is dedicated to the comfort and nurturing of a patients whole personphysically, spiritually, mentally and emotionally. Can a dementia patient stay on hospice for longer than 6 months? Yes. However, if the patient stays on service longer than 6 months, their eligibility must be re-determined by a physician to again qualify for the provision of services and related coverage options, such as Medicare, Medicaid or other health insurance. This is not specific to dementia patients, though. This applies all individuals who have elected hospice.