When someone you care about is facing death and there is no other alternative, what can you do for them? This is a question that was asked by the family of one woman named Mildred. Mildred, born in 1920, lived close to her daughters and their husbands in Arizona. Her husband had passed away less than ten years prior and she herself was beginning to feel that her health was failing. She had lived a full life, which she recounted by writing letters to her great-granddaughter. At the age of 95 she felt that her time on earth was near an end. Realizing this, her daughters took it upon themselves to ensure that the woman who had invested her entire life in their care received the best care herself in old age. The answer was hospice. One of Mildred’s daughters arranged to have her stay in her house, and moved her hospital bed and medical supplies into a bedroom. Mildred’s family wanted her to be in the most comfortable place possible as she transitioned through her final life stage. Although they knew that medical care couldn’t cure Mildred, they wanted to make her as comfortable as possible until her passing. The purpose of hospice is no easy pill to swallow, but it certainly is not “giving up” on your loved one. Families who are experiencing the prospect of losing a loved one might be told that hospice care is the best choice they can make. Hospice is not a taboo word, or at least it shouldn’t be. One of the greatest services you can perform in the moment is to educate yourself about hospice, for you and your loved one. This of course brings us to our first question: what is hospice?
What is Hospice?
What is Hospice? Hospice strives to provide the highest quality of care and comfort to those in their last stage of life. When life seems unsteady and chaotic during these events, hospice exists to provide comfort, care, and counseling for families in need. The primary focus of hospice is in caring, not curing. It is understood that in this stage of a patient’s life, their quality of life should be improved as much as possible. Hospice providers do everything they can to give patients a sense of dignity and respect. They help patients do the things that they love doing as long as they can.
When Is Hospice Care Appropriate?
This is a hard question. Since palliative care revolves around comfort and caring, many terminal patients will choose to live out the rest of their lives in the comfort of their own home with the aid of friends, family, and caring hospice employees.
But while more and more people are using hospice, it can sometimes seem like an afterthought. Some patients don’t consider hospice care until they have very little time left. Part of this is disease dependent. Cancer patients, for example, tend to have a higher rate of dying at home under the care of hospice than patients with COPD. This may be partly because with some diseases, predicting the amount of time a patient has left is very uncertain.
Recognizing the many benefits of hospice care can lead to reliable home care treatment instead of living in a hospital. Most hospice care takes place in the home with a family member serving as the primary caregiver and the hospice employees visiting on a regular basis. But hospice is also available at hospitals, nursing homes, assisted living, and hospice facilities.
Therefore, the best answer as to when to begin hospice is to talk to your doctors and hospice representatives. They are trained to help you and guide you, and will understand your prognosis.
When a patient has been diagnosed as terminal by two physicians and given six months or less to live, it may be time for hospice. Hospice is transitional care that manages pain, symptoms, and works to uphold quality of life. Many different specialists are available to help with hospice care, including neurologists, pulmonologists, occupational therapists, nurses, dieticians, home care employees, and social workers. Hospice treats Alzheimer’s disease, cancer, COPD, ALS, Parkinson’s, and most other terminal illnesses. If you believe that hospice is a real option, talk to a doctor as well as a hospice provider to learn more. It can’t hurt to start the discussion, but it will certainly hurt to wait. In most cases hospice care can drastically improve the quality of life for a terminally ill patient until their passing.
Hospice is for Families, Too
Care providers support families who are facing difficult circumstances. Whether it is in preparation for a loss or dealing with the loss after the fact, hospice is present to care for the whole family during a life transition. The prospect of hospice is scary. Beyond the physical struggle, there is also emotional turmoil. Beyond medical care, hospice providers can help a family and patients deal with these kinds of difficulties. Hospice providers offer an array of grief counseling and family support services.
Facing a death in the family is difficult enough, and money shouldn’t be another stressor during the process. The unfortunate truth is that healthcare in general is expensive. However, if a hospice provider is certified by Medicare, Medicare will pick up the bill. The financial burden shouldn’t be the dilemma that it could be. Others that can help alleviate paying for care are Medicaid, Tricare, as well as health insurance companies. Charity organizations offer support and tend to have a strong community support. These institutions understand the need for hospice and the impact it has on the lives of our community. Covering the financial cost of hospice is more than numbers, it represents the significance of people caring for people, even if they are strangers.
Is Hospice “Medicine”?
Hospice isn’t—and never will be—curative care. Instead, hospice care is for the patient who decides to forgo curative care for palliative care. A large variety of specialists are available for hospice care: neurologists, pulmonologists, occupational therapists, nurses, dieticians, home care employees, social workers, ministers, and more. Their job is to help with pain management, comfort care, and symptom management. They are also there to help the family. There is counseling for the patient and the family before death, and also counseling for the family after death.
Hospice care is personalized for each patient and each family. For a family faced with the death of a child who has a severe motor disorder, hospice may help with occupational therapy to help with muscular problems or to help with pain management. The hospice employees will focus their care on the child’s symptoms, both medical and psychological, while helping the family best care for the child and prepare for their child’s death.
For a family faced with a grandfather slipping into dementia, the care will be quite different. Hospice employees will focus on the aspects of life that the dementia is affecting. Since dementia is a symptom, not a disease, hospice will also focus on the origin of the problem, perhaps Alzheimer’s or perhaps another source.
Hospice Care Basics
Dealing with death is a scary prospect. When faced with a life-threatening illness, a patient is dealing with both medical and emotional difficulties. This is what hospice is truly for, to help patients and families make it through this difficult time with care, friendship, and hopefully a lot of smiles.
Hospice is unlike any other type of medical care because it’s palliative medicine, which is comfort medicine. A hospice worker is unlikely to be able to save a patient—the very nature of hospice care means tending for those who are facing death. Instead hospice employees do as much as possible to relieve and prevent any suffering and make the last days, weeks, months, or years of a patient’s life as promising and fruitful as possible.
Dame Cicely Saunders was one of the pioneers of modern palliative care. While studying nursing in England during WWII, she saw a lot of pain and death. She realized that terminal patients needed an approach that dealt with both the medical and psychological issues while keeping the patients’ dignity intact. She opened the first hospice hospital with a well-trained medical and palliative care staff. Hospice care quickly grew, becoming the huge field we know today.
So, when it comes to considering hospice care, there are three questions to ask early. Who can apply? What is it really for? When should people contact a hospice provider?
Hospice care plays an important role in our society, especially for the elderly and their families, and palliative care is an important resource for those who need it.