Meet Dr. Webb
The purpose of hospice is to provide “comfort care” (Palliative Care) to people who have an incurable disease which, under usual circumstances, will lead to their dying within six months of being admitted to hospice.
Medicare requires that the medical director be responsible for the quality of “comfort care” provided by the hospice and their plan of care for each patient (which includes the control of symptoms such as pain) regardless where that patient resides – a home, a nursing home, or assisted living facility.
The medical director meets these obligations by supporting the hospice staff in their role of “comfort caregivers”; and by:
- being knowledgeable in symptom management;
- being available to the staff 24 hrs a day, seven days a week;
- visiting patients in their homes and recommending treatments, when necessary;
- educating patients and their families during home visits;
- educating staff through in-services and during individual patient discussions;
- communicating with the patient’s primary physician.
Many people (patients, families, physicians) are uncomfortable talking about dying. One of the most important things I can do is to help overcome that discomfort by bringing such discussions into the open, in a compassionate and caring manner; and by helping people understand what is a “natural” way to die and what are myths of end-of-life care.
Three or four generations ago, grandmothers knew how to care for the dying. Technology and hospitals have taken over this and hospice is trying to take us back to a forgotten skill and help us to die peacefully at home.
I will be adding educational pages at regular intervals to hopefully help patients, their families, and professionals, understand what is considered good end-of-life care within the Palliative Medicine field, so that everyone can make better informed decisions.
Robert J. Webb, MD
When Should Hospice Services Be Started?
Hospice services should be started as soon as the doctor feels the person is not likely going to live another six months or when a patient with a life-limiting disease believes that more tests and treatments will no longer help and only cause more suffering.
Once a person has a known terminal diagnosis and then begins their ‘downward spiral’ (increasing visits to the doctor or hospital; needing more assistance in daily activities), it is better to enroll sooner than later. With the support of a hospice team, studies now show that patients live, on average, 1 – 3 months longer and with a better quality of life than similar groups not in hospice. This is likely because they’ve accepted life’s approaching end and focus on comfort only, stopping drugs and treatments which are not beneficial.
If a patient lives beyond their expected six months, but is still deteriorating slowly, and if the hospice Medical Director still feels that the patient meets Medicare criteria for hospice they may continue with hospice services.
As of January 1, 2011, Medicare requires the Medical Director to have a face-to-face visit with these patients before re-certifying them. If that person is not declining, hospice is expected to discharge them. However, when they begin to decline again, they can be readmitted into hospice.
What Services Are Provided With Hospice Care?
The goal of hospice is to prevent suffering and it will do what is required to help someone live comfortably. Because of its interdisciplinary emphasis, Hospice enables a patient and family more of an opportunity to remain in charge of treatment decisions and services.
The Medical Director, along with the patient’s physician, guides the plan of care, supervises the team and the care that is provided. The Hospice nurse makes regular home visits, manages pain and/or other symptoms and teaches the family how best to care for the patient. A hospice nurse is always on call to answer questions or provide nursing care. Hospice aides assist patients with baths and personal care needs, while teaching families appropriate and safe techniques.
The social worker assesses their needs for counseling, social services, and/or financial assistance, and provides information concerning other community resources. The hospice chaplain provides spiritual care, but does not replace the family’s own minister or priest. A bereavement counselor provides support for family members and friends during the illness and is required to do so for 13 months following the patient’s death. Hospice augments the team with a trained volunteer who provides companionship and support.
Other services include, but are not limited to, medically necessary equipment such as hospital bed, walker, wheelchair and oxygen. Diapers, pull-ups, catheters, dressings and disposable bed pans are also available.
Finally, hospice usually pays for all medications that assist in pain and symptom management regardless of the admitting diagnosis.
What is Palliative Care and how is it different from hospice?
To palliate means to comfort. Palliative medicine can improve the quality of life for those with any serious, life-limiting illness (such as Alzheimer’s Dementia, cancers, end-stage heart or lung disease, kidney failure, Lou Gehrig’s Disease [ALS]).
It does this by:
- Helping patients and their families clarify their goals so they can make more informed decisions and avoid non-beneficial treatments (including unnecessary drugs);
- Aggressively controlling symptoms, such as pain or shortness of breath; and,
- Ensuring patients have the opportunity to choose a comfortable and dignified natural death.
Palliative care can be offered simultaneously with all other appropriate medical treatments and is not only for those nearing death – hospice is palliative care for the last six months of life.
Recent studies confirm that people receiving palliative care often live better and longer if we focus on their comfort and not on attempts to cure the incurable. For example, when 150 patients with stage IV lung cancer [cancer that has spread everywhere] were all treated with chemotherapy, but half of them also received palliative care, the palliative care group lived an average of three months longer (11 months vs 8 months) than the group who had chemotherapy only!
Palliative care principles can benefit any doctor and their patient.
Why do patients in hospice live longer than expected?
Several studies have now confirmed what many suspected: patients who receive palliative care and hospice, not only live longer than those who do not receive it, but do so with fewer costs (for themselves and the healthcare system), a better quality of life, and less depression.
In addition to the study I mentioned in the last column—how palliative care extends life for those receiving chemotherapy—another publication has shown that hospice patients live an average of 29 days longer than an identical group not in hospice.
Because palliative care and hospice focus on comfort, people feel better which results in several positive things:
- They are more likely to keep their doctor’s appointments, complete helpful treatments, and take appropriate medicines;
- They tend to eat better, exercise more, and socialize more, which helps them emotionally and physically, improving their ability to fight illness;
- They are less likely to experience medical crises, hospitalizations, and invasive procedures, which helps avoid a significant risk of side-effects and additional suffering.
- Finally, hospice services help families navigate complex healthcare systems and make more informed decisions.
Since the goal of medicine is to relieve suffering, palliative care and hospice help patients (and their doctors) by always ensuring that comfort will be available when they have a condition we cannot cure.
How Is Pain Controlled By Hospice?
One of hospice’s main purposes is to control symptoms such as pain and they do that extremely well 95% of the time.
Pain is more than just physical. The concept of “total pain” must be addressed: pain is like a “four-legged stool” which includes physical, social, psychological, and spiritual aspects; ignore any one of them and “the stool tips over” because we haven’t controlled the problem.
That said, most pain control starts with milder drugs, such as acetaminophen, then moves to those such as tramadol [Ultram] or the anti-inflammatories [such as ibuprofen], and finally to the most potent—the opioids [narcotics derived from opium].
Opioids include morphine, methadone, codeine, hydromorphone [Dilaudid], hydrocodones [such as Lorcet], and oxycodones [such as Percocet]. Morphine remains the gold standard, used by hospices and palliative care teams everywhere because it: is inexpensive; can be taken by tablets or liquid, or injected, or applied to the skin; and has no maximum dose—I’ve had people take over 600mg per day—whereas mixed compounds such as “Lorcet” have limits due the acetaminophen.
Other methods to help control pain include: nerve blocks, radiation, massage therapy, music, stopping non-comfort drugs, exercise, meditation, prayer and acceptance. For that 5% of patients who fail to respond to all these measures, there are still some options available and I’ll discuss them next time.