How to recognise when someone is dying

The dying process usually begins well before death actually occurs, and understanding this process can sometimes help you recognize when your loved one is dying. There are changes that take place physically, behaviorally, and psychologically in the journey towards death, that are signs that the end of life may be nearing.

Death is a personal journey which each individual approaches in their own unique way. Nothing is concrete, and nothing is set in stone. There are many paths one can take on this journey but all lead to the same destination. What happens in the journey of dying, beginning one to three months prior to death, during the last two weeks before death, and during the last few days of life? In this continuum, how can you know when your loved one is dying?

The Dying Process 

As a person comes close to death, the dying process begins; a journey from the known life of this world to the unknown of what lies ahead. As this process begins, a person starts on a mental path of discovery, comprehending that death will indeed occur and believing in their own mortality. The journey ultimately leads to the physical departure from the body.

There are milestones along this journey. Because everyone experiences death in their own unique way, not everyone will stop at each milestone. Some may hit only a few while another may stop at each one, taking their time along the way. Some may take months to reach their destination, others will take only days. We will discuss what has been found through research to be the journey most take, always keeping in mind that the journey is subject to the individual traveler.

The Journey Begins: One to Three Months Prior to Death 

The dying process starts to be recognizable for many people in the period between a month and three months prior to death. As we discuss these changes, we may use the words 'he" or "she," but the process is fairly similar regardless of gender. There are some differences.

Behavioral and Psychological Changes: As a person begins to accept their mortality and realizes that death is approaching, they may begin to withdraw from their surroundings. They are beginning the process of separating from the world and those in it. Your loved one may decline visits from friends, neighbors, and even family members. When she does accept visitors, she may be difficult to interact and care for. This is a time when a person begins to contemplate their life and revisit old memories. In evaluating her life, she may be sorting through any regrets. She may also undertake the five tasks of dying.

Physical Changes: The dying person may experience reduced appetite and weight loss as the body begins to slow down. The body doesn't need the energy from food that it once did. The dying person may be sleeping more now and not engage in activities they once enjoyed. They no longer need food nourishment. The body does a wonderful thing during this time as altered body chemistry produces a mild sense of euphoria. They are neither hungry nor thirsty and are not suffering in any way by not eating. It is an expected part of the journey they have begun.

One to Two Weeks Prior to Death 

The dying process often accelerates in the last one to two weeks of life and can be frightening for families. The mental changes, especially, can be disturbing to family members. At this point in the journey, it is not advisable to "correct" your loved one if she tells you something that doesn't make sense. Gently listen, and support her in her thoughts. If she claims to see loved ones who have died, simply let her tell you. We really don't have a way to know if these are hallucinations, or if our loved ones have seen something we cannot see. Simply love her.

How to Talk to a Dying Loved One Without Being Awkward

Mental Changes: This is the time during the journey that one begins to sleep most of the time. Disorientation is common and altered senses of perception can be expected. One may experience delusions, such as fearing hidden enemies or feeling invincible.

The dying person may also experience hallucinations, sometimes seeing or speaking to people who aren't there. Often times these are people who have already died. Some may see this as the veil being lifted between this life and the next. The person may pick at their sheets and clothing in a state of agitation. Movements and actions may seem aimless and make no sense to others. They are moving further away from life on this earth.

Physical Changes: The body is having a more difficult time maintaining itself, and your loved one may need help with just about any form of activity. She may have trouble swallowing medications or may refuse to take the medications she has been prescribed. If she has been using pills for pain, she may need liquid morphine at this time. There are signs that the body may show during this time:

• The body temperature lowers by a degree or more.
• The blood pressure lowers.
• The pulse becomes irregular and may slow down or speed up.
• There is increased perspiration.
• Skin color changes as circulation is diminished. This is often more noticeable on the lips and nail beds as they become pale and bluish.
• Breathing changes occur, often becoming more rapid and labored. Congestion may also occur causing a rattling sound and cough.
• Speaking decreases and eventually stops altogether.
• Periods of quietness may be interrupted by sudden movements of a person's arms or legs.

Journey's End: A Couple of Days to Hours Prior to Death 

The last couple of days prior to death can sometimes surprise family members. Your loved one may have a surge of energy as she gets closer to death. She may want to get out of bed, talk to loved ones, or ask for food after days of no appetite. Some loved ones take this increase in energy to be a sign the person is getting better, and it can be very painful when the energy leaves. Know that this is common, and is usually a sign that a person is moving towards death, rather than away.  This surge of energy may be quite a bit less noticeable but is usually used as a dying person's final physical expression before moving on.

The surge of energy is usually short, and the previous signs become more pronounced as death approaches. Breathing becomes more irregular and often slower. Cheyne-Stokes breathing, rapid breaths followed by periods of no breathing at all, may occur. Congestion in the airway can increase causing loud, rattled breathing. Again, this change in breathing can be very uncomfortable for loved ones but does not appear to be unpleasant for the person who is dying.

Cheyne-Stokes Respirations

Hands and feet may become blotchy and purplish (mottled). This mottling may slowly work its way up the arms and legs. Lips and nail beds are bluish or purple and lips may droop. The person usually becomes unresponsive and may have their eyes open or semi-open but not seeing their surroundings. It is widely believed that hearing is the last sense to go so it is recommended that loved ones sit with and talk to the dying loved one during this time.

Eventually, breathing will cease altogether and the heart stops. Death has occurred.

Many people wonder if they will recognize if a loved one is dying, and there are often signs which begin a month to three months prior to death. Understanding these signs may not only help you prepare for your loved one's death but may bring you comfort as you face these physical and mental changes. If your loved one is on hospice, your hospice nurse, social worker, or clergy can help you recognize and understand some of the changes, and help you know what will help you support your dying loved one as much as possible.

By Angela Morrow

Link to full article: https://www.verywellhealth.com/the-journey-towards-death-1132504?utm_source=facebook&utm_medium=social&utm_campaign=shareurlbuttons&fbclid=IwAR0E_cRFzHrmwGUYj_Apidus9iiBuhuGg-I5_aEAbz73Bef9YY8XCdYiq6A

What if PSA returns after surgery!

The return of PSA is a possibility that strikes terror in the heart of every radical prostatectomy patient; in fact, for many men, the dreaded follow-up PSA tests after surgery are almost worse than having the operation itself. What will you do if your PSA is no longer undetectable? The good news is, you may not need to do anything for years.

Does the man have a local recurrence of cancer that would respond to radiation, or does this represent micrometastases to lymph nodes and bone? Until now, there has been no way to tell.

In a landmark paper -- the largest, most complete study of the return of PSA after radical prostatectomy -- Hopkins doctors have developed guidelines to help patients and doctors know what to do if PSA comes back. Their remarkable effort -- an elegantly simple chart that accurately predicts a man's risk of developing metastatic cancer -- is the post-operative equivalent of the "Partin tables," developed by urologist Alan W. Partin, M.D., and urologist-in-chief Patrick C. Walsh, M.D. Like those now-indispensable tables, this chart has the potential to revolutionize the way doctors and patients make decisions about what to do next.

"PSA is very sensitive in detecting any recurrence of cancer. That's because only prostate cells make PSA -- so if it goes up after a radical prostatectomy, it means prostate cells are still present somewhere. For all intents and purposes, it means that a few cells escaped the prostate before it was removed, and now have grown to the point where they're producing enough PSA to be detected," explains Walsh.

"Fortunately, for most men with organ-confined cancer, this never happens. However, for men who had more advanced disease at the time of surgery, the return of PSA is extremely frightening." Walsh originated this study to fill what he describes as a "large knowledge gap" for patients and doctors.

• "The first thing many patients want to know is, how long are they going to live?
• And the first thing many doctors want to know is, when should they begin treatment, and how should they treat these patients?
• Does the man have a local recurrence of cancer that would respond to radiation, or does this represent micrometastases to lymph nodes and bone?"

Until now, there has been no way to tell. The study, published in the Journal of the American Medical Association, is based on 10,000 patient-years of follow-up data. Between 1982 and 1997, nearly 2,000 men underwent a radical prostatectomy at Johns Hopkins. Of these, 315 men developed an elevated PSA (defined as being higher than 0.2 nanograms/milliliter). Eleven of these men opted for early hormone therapy, and were not included in the study. The remaining 304 men were followed carefully.

On average, it took eight years from the time a man's PSA first went up until he developed metastatic disease -- which suggests that there is no need to panic at the first sign of a rise in PSA. WHAT THE NUMBERS MEAN If you have a Gleason score of 5-7 Your PSA increased more than two years after surgery AND your PSA doubling time was greater than 10 months: Your chance of not developing metastasis(having a bone positive scan) in: Three years:  95 percent Five years:     86 percent Seven years:  82 percent OR your PSA doubling time was less than 10 months: Your chance of not developing metastasis in: Three years:  82 percent Five years:     69 percent Seven years:  60 percent OR your time to first PSA recurrence was less than two years: AND your PSA doubling time was greater than 10 months: Your chance of not developing metastasis in: Three years:  79 percent Five years:     76 percent Seven years:  59 percent OR your PSA doubling time was less than 10 months: Your chance of not developing metastasis in: Three years:  81 percent Five years:     35 percent Seven years:  15 percent If you have a Gleason score of 8-10 AND your time to first PSA recurrence was greater than two years: Your chance of not developing metastasis in: Three years:  77 percent Five years:     60 percent Seven years:  47 percent OR your time to first PSA recurrence was less than two years: Your chance of not developing metastasis in: Three years:  53 percent Five years:     31 percent Seven years:  21 percent

"We set out to ask a few questions, says Walsh: "Could we predict how long it would take for patients who had metastases to show them on a bone scan, and then once that happened, how long would they live? The news is actually quite good: Most patients do very well for a long period of time". On average, it took eight years from the time a man's PSA first went up until he developed metastatic disease -- which suggests, Walsh says, that "there is no need to panic" at the first sign of a rise in PSA. Even after developing metastatic cancer (detected by bone scans and other imaging techniques), men still lived an average of five years -- and if the metastases showed up more than seven years after surgery, men had a seventy percent chance of being alive seven years later.

"When men see their PSA levels rise again, they think that means the cancer is back and they need to get treated right away," says oncologist Mario Eisenberger, M.D., a co-author of the study. "But men often live for years without having the cancer spread. This information will better equip doctors and their patients to decide what treatment -- if any -- is most appropriate."

This interval between the reappearance of PSA and the first sign of advanced disease can be predicted, the Hopkins researchers found, using three pieces of information:

• The Gleason score of the pathologic specimen (the removed prostate, evaluated by a pathologist after surgery). Is it Gleason 7 or lower, or Gleason 8 or greater.
• The time it takes for PSA to come back. Is it less than two years after surgery, or greater? And,
• How rapidly is the PSA level doubling? Is it greater or less than 10 months?

Using these criteria, men and their doctors can pinpoint the likelihood of developing metastatic disease. For example: If a man has Gleason 7 disease, has his first PSA recurrence more than two years after surgery, and has a PSA doubling time longer than 10 months, his likelihood of being, free of metastasis at seven years is 82 percent. Conversely, if a man has Gleason 7 disease, but his PSA goes up within two years of surgery, and the time it takes PSA to double is less than 10 months, his likelihood of being metastasis-free at seven years is 15 percent.

"So the first thing these tables can do is reassure the many patients who are going to have a long-term, symptom-free, metastasis-free interval, that close observation is all that's really necessary," says Walsh. On the other hand, says urologist Alan W. Partin, M.D., Ph.D., co-author of the study: "If their chances of progressing rapidly are high, they may wish to start hormonal therapy earlier or get involved in an experimental trial" of more aggressive treatment. "These tables are going to help men who are at low risk and help men at high risk make a more educated decision. We hope it will also decrease the anxiety for some of them." The tables will also provide invaluable baseline data for future drug research, adds Partin. "Until now, it's been difficult to know if a drug was helping someone because you couldn't be sure what the disease would have done on its own. Now, researchers can compare their treatment groups with our study group and tell if their treatment is improving survival."

PSA Anxiety:

The Downside of Ultra- Sensitive Tests

   You've had the radical prostatectomy, but deep down, you're terrified that it didn't work. So here you are, a grown man, living in fear of a simple blood test, scared to death that the PSA- an enzyme made only by prostate cells, but all of your prostate cells are supposed to be gone -- will come back. Six months ago, the number was 0.01. This time, it was 0.02.

You have PSA anxiety. You are not alone.

This is the bane of the hypersensitive PSA test: Sometimes, there is such a thing as too much information. Daniel W Chan, Ph.D., is professor of pathology, oncology, urology and radiology, and Director of Clinical Chemistry at Hopkins. He is also an internationally recognized authority on biochemical tumor markers such as PSA, and on immunoassay tests such as the PSA test. This is some of what he has to say on the subject of PSA anxiety:

The only thing that really matters, he says, is: "At what PSA levels does the concentration indicate that the patient has had a recurrence of cancer?" For Chan, and the scientists and physicians at Hopkins, the number to take seriously is 0.2 nanograms/milliliter. "That's something we call biochemical recurrence. But even this doesn't mean that a man has symptoms yet. People need to understand that it might take months or even years before there is any clinical physical evidence."

On a technical level, in the laboratory, Chan trusts the sensitivity of assays down to 0. 1, or slightly less than that. "You cannot reliably detect such a small amount as 0.01," he explains. "From day to day, the results could vary -- it could be 0.03, or maybe even 0.05" -- and these "analytical" variations may not mean a thing. "It's important that we don't assume anything or take action on a very low level of PSA. In routine practice, because of these analytical variations from day to day, if it's less than 0. 1, we assume it's the same as nondetectable, or zero." 

 FURTHER READING

Pound, CP; Partin, AW; Einsenberger, MA;
Chan, DW; Pearson, JD; and Walsh,PC.
"New Method to Assess Risk of Advanced 
Cancer After Prostate Removal," Journal of the 
American Medical Association, Vol.281,
pp.1591-1597.

Shorter Duration of Radiation Safe in Treating Prostate Cancer

This study showed that stereotactic body radiotherapy reduced the duration of treatment from 45 days to 4 to 5 days with no evidence of causing worse toxicity in the long run.

Men with low or intermediate-risk prostate cancer can safely undergo higher doses of radiation over a significantly shorter period of time and still have the same, successful outcomes as from a much longer course of treatment, according to researchers.
 
The study showed that this type of radiation - stereotactic body radiotherapy - is a form of external beam radiation therapy, which reduces the duration of treatment from 45 days to four to five days with no evidence of causing worse toxicity in the long run. 

"Most men with low or intermediate-risk prostate cancer undergo conventional radiation, which requires them to come in daily for treatment and takes an average of nine weeks to complete," said lead author Amar Kishan, Assistant Professor at University of California, Los Angeles, in the US. 

"With the improvements being made to modern technology, we have found that using stereotactic body radiotherapy, which has a higher dose of radiation, can safely and effectively be done in a much shorter timeframe without additional toxicity or compromising any chance of a cure," said Kishan.

For the study, the team included 2,142 men with low or intermediate-risk prostate cancer who were treated with stereotactic body radiotherapy. They were followed for a median of 6.9 years.

Nearly, 53 per cent men had low-risk disease, 32 per cent had less aggressive intermediate-risk disease and 12 per cent had a more aggressive form of intermediate-risk disease.

In addition, the recurrence rate for men with low-risk disease was 4.5 per cent, 8.6 per cent for the less aggressive intermediate-risk, and 14.9 per cent for the more aggressive intermediate-risk group, findings published in the journal JAMA Network Open showed.

Overall, the recurrence rate for intermediate-risk disease was 10.2 per cent.

These are essentially identical to rates following more conventional forms of radiation, which are about 4-5 per cent for low-risk disease and 10 per cent to 15 per cent for intermediate-risk disease.

This method is both safe and effective and could be a viable treatment option for men with low and intermediate-risk of prostate cancer, the study suggested.