Hospice Care: Living and Dying with Grace
It doesn’t take much looking to find books, articles and other information to show virtually any human how to live well. Along with possessing knowledge, experiencing adventure, and, of course, obtaining nearly any material thing our hearts desire are high among the things the “average” human strives for. We live for it. We might even say we are dying for it. Living well is a goal for most people. Dying well is rarely considered.
Striving for, obtaining and enjoying these things can enrich life. They can bring us a measure of happiness, and can give us a sense of accomplishment. There is nothing wrong with this pursuit, and the enjoyment of one’s gains.
In life, however, there comes an unavoidable time when these things—these things—can no longer bring us peace and pleasure. There is a time when life narrows down to what really matters. That time is when one is dying.
This time in life is not easily reckoned with for many people. Our culture doesn’t glorify death, it is focused on the here and now. Speaking of death is taboo, and thinking of it is a place in most people’s minds that is not frequently visited. Thus, they process of dying is too often denied, ignored or avoided, even when the diagnosis, the doctors and the dying have made it all obvious.
In centuries past, dying and death were embraced as a normal part of the circle of life. Death was welcomed when it was obviously unavoidable, and without extensive medical care that is now available, the dying process was relatively short, and death happened quickly. There were no cures, no medical treatments and no recourse. The dying person and their family prepared for the inevitable, and it inevitably came. Life for the living went on, and their loved one’s passing was more easily accepted. The great circle was now complete for that person, and they carried on, knowing and accepting that one day, it would be their turn to go to the great unknown.
So what is it that really does matter at the end of one’s life? The answer varies considerably, but there is one near-constant: being with loved ones. The possessions, honors and adventures the dying person once enjoyed can no longer bring joy. Only the love of family and friends can bring joy during the dying process. This joy can be marred by incredible pain that dying sometimes brings. The loved ones may struggle to accept the dying process their mother, father, spouse, sister, brother or even their child is enduring. This process may indeed be easier for the dying person that those who will remain.
This is where hospice comes in. They can help ease the physical pain and suffering for the dying person, and they can provide support and structure for the loved ones who are struggling to cope with the inevitable loss.
The word hospice is defined as a type of care/philosophy of care that focuses on the palliation of the terminally ill, chronically ill or seriously ill patient’s pain and symptoms. This includes attending to their spiritual and emotional needs. (Palliation is care that strives to relieve pain and improve quality of life, while not treating/attempting to cure the illness due to its advanced state.)
Within the United States, the term “hospice” is generally recognized as a specific type of care which may be administered in a hospice facility or within the home of the patient. In other countries, however, “hospice” is generally recognized as a place, a center or a facility that serves the terminally ill. Inpatient hospice centers can be found in larger cities in the United States as well, but a majority of the care is provided in the patient’s home, or the home of a caregiver or loved one if the patient is staying there. The inpatient stay in a hospice facility is typically not long-term; rather, it is designed to relieve the family and caregiver when they need time to restore themselves from the full-time caregiving process. It is also designed to serve as a means to regulate and modify the patient’s pain medications for optimal relief and comfort. Some patients, however, are not able to stay with a loved one, and the inpatient hospice becomes the place where they spend their final days, weeks and/or months. Hospice care can also be provided within a nursing home setting. While the patient’s physical and medical needs are being filled by the nursing home staff, the hospice staff can visit to provide specialized care and guidance through the dying process to the patient as well as the family.
If you were to ask healthy, middle-aged adults where they would like to spend their final days, most would answer that they would choose to be in the comfort of their homes. Few would choose to spend that time in a hospital. It is a natural feeling to desire to live out one’s life in the place they call home, instead of a medical institution. Hospice allows this to be.
According to hospice statistics, only approximately 10% of us will die a quick, sudden death—likely accidental, or from a heart attack or stroke, or some such emergency. The rest of us will die from an illness that may be short-term, or may last for months or years. Thus, the vast majority of us could likely benefit from hospice care at the end of our lives. If we were given the choice to sign up for one or the other, most of us would choose a sudden death. Few would choose to spend their last months and years as long-term patients fighting an illness. However, illness and suffering is what will happen to many people.
There is hope, and this hope is hospice. Hospice can help with the extended pain and suffering that dying and ultimately death can bring. Its goal is to make the process of dying as pain free as possible, while allowing as much dignity and grace as possible. There is the spiritual/emotional component as well, which encompasses the dying person as a whole, as well as the family’s grief. This dimension strives to bridge the unknown chasm between here and what lies beyond here, and it is addressed in whatever form is most comfortable for the patient and their family, whether it be with pastoral care, religious rituals, or other individualized belief practices.
In order to qualify for hospice care, the patient must be medically certified to have less than six months to live. While the most brilliant doctor can never predict exactly when death will come, these estimates allow a patient to qualify for services and for these services to be covered by Medicare or private insurance. Medicare and most insurance plans cover most, if not all hospice costs for standard hospice care. It is recognized that hospice care is necessary as the most appropriate way to manage the pain and care that the patient needs at the end of their life. Ironically, there are sometimes patients who “graduate” from hospice; the predictions made by their medical team do not come to pass, and their lives continue past the six month mark with improved health.
One of the most difficult aspects of hospice care to manage is the initiation of services. This begins when the patient and/or the family decide that it is time to acknowledge that the patient’s life is nearing an end. Our culture is largely a death-denying one, so choosing to acknowledge that death is imminent is not an easy process. Many people choose to fight the unavoidable with denial, which may hurt the dying person’s chance to live their final weeks/months with dignity and acceptance. In some cases, the patient may wish to begin hospice care, but feels that it would hurt their family if they admit they are ready to accept death, when, perhaps, their family is not ready to begin the process of letting them go.
Nearly every family who has received hospice care will report after their loves one’s death that it was the best decision they could have made. Most report extreme satisfaction with the way hospice care handles the heartbreaking experience of dying, both for the patient and for the family.
Estimates of overall Medicare expenditures in the last year of the patient’s life are considerable. One study estimated that 80% of all Medicare funds are spent in the last year of life. Much of this is for treatment that is ineffective, causes more pain, decreases the quality of life and the level of dignity the patient can enjoy.
When the physician orders hospice care, the hospice team begins their work. This team consists primarily of nurses, with other staff such as social workers providing structure and support for both the patient and the family. Also, most hospices have volunteers who spend time with the patient to simply keep them company, provide respite for the primary family caregiver, or help them enjoy hobbies they once enjoyed. Many patients enjoy conversation, being read to, working on puzzles or crafts, and some are even able to take walks. Many hospice patients have a strong bond with their pets, and this is incorporated into their care whenever possible. In some areas, hospices provide “adventures” that the patient once enjoyed such as fishing, or even taking a final flight in an airplane as a co-pilot when they once were the pilot.
Many hospices have support networks for the family after their loved one has passed. Follow-up phone calls and grief support groups are offered to help the grieving family to cope with their feelings of loss.
St. Catherine Hospice in Garden City provides hospice care for 17 southwest Kansas counties, including Stevens County. They can be reached at www.st.catherinehospice.org, or by phone at 620-272-2519.